Seriously fed up!

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Seriously fed up!

Postby charley » Mon Apr 22, 2013 12:34 am

Hey guys, hope you're all doing well and have been enjoying the lovely weather :) Sorry for this, but just need a bit of a rant right now.

Am genuinely fed up of constantly having to make my life revolve around this stupid condition! I am 20 years old and I can't just do whatever the hell I want whenever the hell I want like most of my friends and it is seriously driving me insane! If I go on a night out, I can't spend the entire night dancing without my friends carrying me home at the end of the night because I can't even stand. If I want to just go places I have to see how far they are just to make sure I won't overexert myself whilst doing it. I can't just get drunk whenever I want, I have to plan it carefully because when I drink I can't sleep because of the effect it would have on my medication! I have to keep making excuses for not doing things I want to do because when I say I'm in too much pain people just sigh and say oh again, well that's just great. Either that or I get people thinking I'm lying about it because I'm too young to suffer from any kind of chronic pain syndrome never mind something that no one has ever even heard of. When I get jobs, I feel like I can't tell them about this stupid thing because I have almost been sacked from two jobs because of it! And then when I try asking for help, e.g. DLA, I just get laughed at because you can't possibly need help if you are only in so much pain you are bedridden every so often, but you can't pinpoint how often because that would just make life easier. And of course you can't pinpoint how far you can walk without being in a lot of pain, because the pain is always there, but not always enough to make life difficult. :too-upset: :pull-hair: :scream-1: :banghead:

If you actually read this far and haven't lost your sanity, I'm genuinely impressed, and thank you for putting up with my insane ranting I genuinely appreciate it. You guys on here really are amazing. :grouphug:
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Re: Seriously fed up!

Postby sweetie pie » Mon Apr 22, 2013 1:52 am

charley,think I am the wrong one to reply to you, but I totally understand how you are feeling re this fibro as so much to it, what makes me sad is the fact your only 20 years old,i cant imagine what you are going through as that age is so young,& when your out with your friends it cant be easy as they will prob not understand how you are really feeling,so it must be so hard for you having this illness,i am struggling but I am a lot older than you, my heart goes out to you charley it really does,i just cant get the right words out,so I will leave it to the other laddies,best wishes to you charley XX :hugs: :hugs:
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Re: Seriously fed up!

Postby charley » Mon Apr 22, 2013 2:03 am

I appreciate the sentiments, and the hugs, so thank you :) I'm not trying to say I've got it harder because I'm young though just in case anyone thinks that....I suppose it's just hard in different ways. If I miss uni for a day, I just catch up, but if people like you who are older than me miss work for a day, you miss out on pay or holiday and of course you have different things that are affected by it.
I hope you aren't struggling too much, and that it isn't too bad for you at the moment, hopefully the nice weather we've had has made things a bit easier for you! And thank you :) :hugs: :hugs:
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Re: Seriously fed up!

Postby tessmcg2012 » Mon Apr 22, 2013 3:46 am

That really sucks. I'm twice ur age and its only in the last 5 yrs that I can't go out socially. I can't imagine how confining it must be for someone so young... What I have learned over the last 18mts = if I can have energy, I can manage the rest. So anti-oxidants are really important. So I take lots of COQ10, Boots do a 200mg if you can afford them, (shop around, Tesco do cheap 30mg ones - not sure re quality tho) and CherryActive juice/capsules have really relieved most of the symptoms lately. So I am a real believer in trying new things, some things work, some don't. these are what I have found make me worse, definitely NO to the first 4.
posting.php?mode=reply&f=2&t=16812&sid=f5c8803eff7346ef069e57c7056a8ba8#
Beer - NO (the hops attacks our muscles and makes us worse)
MSG - NO (knocks me out completely if I get a takeaway without asking for NO MSG)
Sugar - No (eats away at nerves)
Caffeine - No
Potatoes - No
Carrots - No
Green veg - No

You may be completely different, but if any of this can make a difference to you, then its worth sharing. Best wishes, and don't give up hope of it getting better. It can. posting.php?mode=smilies&f=2#
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Re: Seriously fed up!

Postby catichat » Mon Apr 22, 2013 7:51 am

I was 18. :-( I also have ME. It's been 24 yrs now. Living with this condition every day is not only physical torture, but also mental torture, as the pain and fatigue, on a daily basis, is like chinese water torture. Its mentally draining. Sorry this probably sounds disjointed, but ive not slept all night due to pain and sickness, so im feeling rather incoherent. How government expect sufferers to work when in constant pain is way beyond my comprehension! Sorry, crazed rant over. :-(
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Re: Seriously fed up!

Postby painprincess1 » Mon Apr 22, 2013 10:45 am

yep i agree with last port mental torture is as bad as the pain. ok im 40 but im not dead and i miss going out.i miss so much but what u gonna do we have this weather ppl believe it or not and we have to deal with it. if u have good friends who stick with u then that better then any night out.u got a live time to find new things u can do and u will , your young trust me u will have lots of great times ahead. and u really have to believe that.its a fight like being a boxer in the ring u againt fibro. ok he knocks u out a few times a week but u get up and your not out for the count.keep fighting even if it just in your head darling xxxxx
smiles and the world smiles with you. cry and you cry alone.
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Re: Seriously fed up!

Postby LouLou » Mon Apr 22, 2013 3:10 pm

Hi Charley

:hugs:

I know how you feel. Though I'm not as young as you (30) I still feel old beyond my years. I still get frustrated that I can't say yes to all our invites out or spend the night dancing with my sister in a club till dawn like we used to.

It was my OH's birthday the other weekend and it was a big night on the town (where I grew up and used to go with my sister lol) so I went along and luckily the bars they went to all had lots of seats so I sat down and rested while I could. Everyone else was drinking away but I only had one glass of wine as any more than that and I love anyone and everyone lol :oops: plus I find it does make my pain worse when I drink.

Then it was off to the club where everyone danced away but by the side where I could sit and to be honest not everyone danced at the same time so I nearly always had someone with me. Plus as I was sober it was actually much more fun watching them all make complete idiots out of themselves lol. My dad very kindly stayed up to come and get me at 1am as I could stand it no longer bless him.

So maybe you can still go out and have fun, you don't always have to drink very much and I swear I've had much more fun widning them all up with their drunken antics they couldn't remember than I would have had being drunk myself.

I know you are only 20 and at uni which is all about socialising, which you can still do just make sure you can rest afterwards to recover. Or even if you leave a night out a bit early at least you made it out?

I know it's not ideal and believe me, even though I did have fun that night I really wished I could have danced a bit more than I did and joined in a bit more. BUt the way I see it, at least I was there, I was dressed up I made the effort and I was out. Plus I didn't wake up feeling too bad at all unlike the OH who had the hangover from hell and acted like a right baby! lol.

I hope that helps in some way Charley. Keep your chin up and keep smiling. I think you are doing a fab job being at uni and studying so don't be too hard on yourself.

Take Care
xx
What doesn't kill you will only make you stronger ;-)
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Re: Seriously fed up!

Postby charley » Wed Apr 24, 2013 1:17 am

Thanks for the advice tess, might have to try something a bit cheaper like cranberry juice for the anti-oxidants, but will def. try and give some of the food things a go....can't afford takeaway so that's not really an issue, and although I'm not diabetic my bloody sugar can get low so I'd need to be careful with that one, but again thank you and will definitely try some of that and see if it works for me :)

catichat, that's how old I was when I got diagnosed...had symptoms since I was 14 though :/ It is horrible. Don't worry, doesn't really sound disjointed and I hope you're feeling better now :)

Thanks painprincess, really appreciate it :)

LouLou, sounds like you had a lot of fun!! :) My only problem with not drinking on a night out would be that I would probably want to kill my friends lol I genuinely hate drunk people if I'm sober....always fun :P And I know the feeling of loving anyone and everyone with a few too many! Gotta love the life of a student lol
Your Dad sounds like an absolute legend! The problem with going out at uni is I pretty much have to walk everywhere, or pay a LOT of money for a taxi (looking at £6-8 for a mile trip which takes 5 mins!)....at home, sometimes one of my friends Dads will stay up and pick us up after a night out though.
Gotta love the hangovers haha! Hope your OH wasn't too much of a pain in the butt for you though! :P A few months ago my mum had her first hangover (never used to get them, the lucky sod) I couldn't stop laughing! But my mum almost always laughs (and shouts, just because she's that lovely) when I have a hangover so it was well deserved!
Thank you :) Uni isn't so bad, I'm only in 2 days a week, and have been living on campus this year, so have been relatively close to everything.....next year will be a totally different story though! Haha :)
:hugs: xx
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Re: Seriously fed up!

Postby LouLou » Wed Apr 24, 2013 10:06 am

Hi charley

I did find myself getting annoyed with certain drunk people, especially my brother in law who kept randomly hugging me every five minutes and telling me he loved me, wanted to smack him one after the fifth time lol. It's not for everyone and I must admit I did kind of miss the days where I could have a few drinks and get merry with the others, and I probably would have had a few if it wasn't for the fact I was having quite a bad pain day anyway lol. It was just a choice I had to make.

Oh and my dad is the best lol he said it was like the good old days where he used to drop me and my sister off for a night out lol. He said he didn't mind picking me up as it's his way of helping me bless him.

But you are still young and you still have many nights out ahead of you Charley. Just try and enjoy the times you can get out and about, make some great memories and have some fun. I know the pain and fatigue are always there but sometimes just getting out for a few hours can work wonders.

I know it's not of much help when you are feeling so fed up, sending you some hugs. Really admire you for being at uni and coping the way you are!

Take Care
xx
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