Upset. Moaning. Depressed. Sorry.

[Berthy]

So, I went out last night, to a gig/pre-Halloween party sort of thing. I was over the moon because I’m on half term and was all geared up to be spending the entire week with my friends that I haven’t seen for months (again!) and of course – good old fibro managed to get in the way and ruin everything.

We spent hours getting ready, having a good girly night before the fun, we get to the venue and it dawns on me that I know things are going to end badly; but it push it to the back of my mind as we push and shove our way to the front row. Bouncing away and screaming lyrics into our friend’s faces as they put on an amazing show, various friends in various bands – making the night worth every bit of pain in the end.

And then BAM! It hits me like a tonne of bricks. I can’t stand, I can’t move, I fall the floor and my friends do their best to help me, still not really knowing what’s going on, but at a gig, if someone falls, everyone stops and helps them up, and then resumes beating the living daylights out of the air above their heads. I got dragged out of the crowd and launched into a chair, people swarming round me and making the entire ordeal a LOT more embarrassing – like that was possible. But of course, once they realised there was nothing visibly wrong for them to gawp at, they disappeared and forgot about me. Naturally.

And I ended up having to ring the rents and getting them to drive the 70 mile round trip to pick me up at about 11 at night instead of staying the week I was supposed to. My friends didn’t want to go home so they called me ‘boring’ and left me sat on a table, on my own in the middle of a bustling pub, where I knew very few people, probably a handful, including the two people I called best friends, until last night that is.

People just don’t want anything to do with a friend that isn’t able to go out every night of the week and all weekend, every weekend. Getting drunk, going to parties, doing drugs or whatever people do now – I’m not entirely sure anymore. You’re a bad friend, boring, sad, pathetic, a loner, a freak, a nerd etc. etc. etc. And now my best friend who has been with me through thick and thin for the past four years; has found a new, better, more ‘fun’ best friend. So I’m just an awkward third wheel.

And now I’ve realised, I can’t even go out for a full night, let alone spend the weekend with friends. I ended up breaking down completely when I got home, not particularly because of the pain, but because I’ve lost my best friend. I’ve realised I’ll probably never really have another best friend, not a proper one anyway. I can no longer go out like a normal 18 year old should be able to. I’m not ‘living it up’ now I’m 18, like I should be able to. Instead, I’m hobbling round like I’m under house arrest at 70 years old.

This is horrible. I hate it. It almost pushed me to cutting again last night and I thought nothing ever would again after nearly 2 years of being clean. I don’t know how I’m ever going to live the rest of my life like this, I can’t even manage 4 days at college a week, two of which end at 12:15 and the others are only 9 - 2:30. How am I EVER going to manage a 9 – 5 job 5 days a week?! I can’t. To put it plainly, I am the proverbial piece of wood in which you are putting a screw. Screwed.

And even as I’m writing this, sat in the chair with my legs crossed beneath me, I can feel my knees seizing and the searing pain shooting up my legs. It never goes, there’s always some form of reminder of it. Everywhere. It’s never going to get better, I know that well enough. The only thing it will do from here is get worse. Oh what a wonderful thought that is. I was asked last night what was going on with me and boys and I simply replied “Nothing. There probably won’t be for a long time. Think about it, if I get into a serious relationship, how do I tell him/her that at some point later in my life they could be married/in a long term relationship with a cripple, in a wheelchair or using crutches, on a good day?” to which I simply got the reply “okay”. That just about sums my life up at the minute really, people pretend to care/listen etc but really, don’t give a shit about my measly life, it’s nothing to them, so why should it be to me?

[Hidden]

Hi sweetie

You didn't loose a best friend last night as a best friend would be there for you now! I can't even imagine how you are feeling at your age, however 3 of my children have already past your age and I am sure your family of worried for you...please talk to your family about how you are feeling as well as any health care proffessional you see...you will have to addapt life to suit and at collect there will be student support to help you too.

Maybe your nights out need to be modified to something that won't end in you having to be collected in the way you did last night...try not to set to high a gole there are other ways to have fun and your real friends will see that too...we are also not 18 for long and life passes by so quickly...evn at 46 I still feel 18 in my head, sadly the mirror and the body tells me thats not the case.

recoup today and tomorrow is another day...ask your 'friends' how they would feel in your situation and leave them to think aout it for a few days xx

[Berthy in reply to Hidden]

My family are used to my mood swings, they just brush them off now and I don't want to burden mum with anything else, she's got more then enough on her mind without me adding to it.

I'm getting financial support from college, but they don't pay me if I'm not in for one day of the week and well, I've been back for a good couple of months now and have only actually been in for 2 full weeks, so that's pretty useless. I had a fight with them last year and tried to fight my corner on my own until the head got informed that I was 'causing trouble for the entire college system' but hey, why change the habit of a lifetime? And it's on my record and details on the college system that I'm disabled, but nobody cares, because I'm not obviously disables. They all seem to go by the phrase 'don't believe what you can't see' so by that logic, cancer isn't real either. -.-'

I thought I had set a realistic goal last night, with it being in a pub I knew that there would be SOME seats somewhere but naturally, they were all taken by people drinking and such like. Oh well,I'll just have to really plan things out and make sure I stick to doing as little as possible whilst still doing something - if that makes sense?

I know, I guess I should be thankful for the fact I had such an active social life before, from when I was about 14 to 16, before i was diagnosed. Then again, I guess that's what I'm clinging to, times gone, and lost.

I did last night, I feel quite bad because I was being forced to sit outside last night in the freezing cold with a devil onsie on, not exactly the warmest of garments when outside in -1 degree temperatures xD so I was in a bad mood because of that and the pain and one of the friends turned to me and just said "why do you even bother coming out at all if you know you're going to be like this" and that's the first time I've left the house for anything other then college since the 21st of September, on my birthday and I completely lost it and said that she should stop asking me to go out if she's going to turn around and say things like that, and I asked her why she thought I hadn't been out in over a month anyway and then when I was told was boring I simply turned to them and said alright then, you try having fibro for just one day, and then call me boring, have no sympathy whatsoever and just accept being called boring, and told that nothing is wrong with you because it doesn't look like it etc etc, but yeah, they're not talking to me now so, really, I'm not going to try to make the effort after it was me that was basically forced into having to go home because quite simply, they didn't want to.

Sorry, rant over, thank you<3xx

[linksy]

Hi sorry your night ended early and you are disappointed with your friends. I have realised that i have to pace myself if i want to attend anything. are you attending any specialist clinic they are usually called m.e fibro cfs clinics i attend one in my area. They can help you to understand how to try and prevent the crash and burn times. Talk to your dr about a referral maybe and maybe someone to talk to about how you are feeling. I find writing my feelings down helpful to get things off my chest and then i delete it. it is for my eyes only but i feel loads better after expressing myself fully. Take it easy and the way i get my head around things is to realise that other people can only understand what it is like if they experience things themselves so i find the most support on this fibro forum. take care x

[Berthy in reply to linksy]

Mmm, I'm really going to have to learn to consider things a little more carefully instead of simply doing - I'm too impulsive for my own good; evidently.

Yeah, I write a lot, it's probably my favorite thing to do >.< I choose not to delete it though, my logic is, if i leave it be for a while and then go back to it - I can see how bad I WAS and how much better I am now

I know, and you forget it in the heat of the moment etc, I try to remember but it's difficult, you know?

This is like me home now, I've made some good connections and friends - ones I'll cherish for as long as I live, thank you :)x

[Extremelygrumpy]

I know you had a horrid night and are feeling low, you were diagnosed earlier than me... I was 24, but amazingly it went into what I would call remission with a few flare ups of absolutely no energy and would get signed off work , spent the week doing nothing but resting and recharging my batteries and had 7 years of good life, met and married my husband and had a child, please don't give up, now I,m a wreck but I am in my forties. Are you getting the right pain meds maybe your gp could find you something different it was trial and error for me but the difference when we finally got it right was amazing

Fingers crossed

Hugs VG x

[Berthy in reply to Extremelygrumpy]

I know what you mean, that's why I can't really go out on the weekends, because I NEED the time to rest and regain energy in order to get through the next week. i absolutely hate it, I have no social life whatsoever and it's just...poo.

I'm glad you found love Everyone deserves that at least - specially fibro suffers!

I was put on gabapentin a couple months ago and they were good at first, but I'm like a zombie when I take them, in order to get rid of the pain I have to take so many a day and they cause em to either fall asleep or stumble around and do stupid things because it desensitiszes my skin to such an extent that I just, can't feel anything, like when you're drunk really.

I'm going to keep bugging them - it's all I ever do but to be honest, they're there to help me and basically, they're not.

Thank you Beth x

[Hidden]

Hi Sweetheart

Sorry about your awful evening out. I think you need to maybe work out your limitations and for now try and work within them. What you did last night would be hard or almost impossible for most of us fibro sufferers. Maybe you pushed yourself too hard too quickly. I was on Gabapentin and like you was a zombie when I had to up the dose. Remember you can't just come of it you have to come down in a controlled manner. I did and felt awful for the two weeks I was coming off it but I am now on Lyrica. Like all meds it doesn't suit everyone, but I feel really good on it along with strong co codomal. You need to go back to your Drs and keep going until you get your meds sorted.

Don't feel too bad, we all have bad times and like mumof5 said, a best friend wouldn't leave you and say things like that's

Big piggy hugs xxxxxxxxxx

[Berthy in reply to Hidden]

The thing that's upset it was that I genuinely thought I was working within my limits, I guess they've changed DRAMATICALLY since the last time I went out...

Oh I know, I've done that before - never again! No, I'm seeing the specialist who diagnosed me next week so I'll speak to him about it and see what he says, I'm on very strong co-codamol as well as the gabapentin so yeah, we shall see!

Mmm, I know, but still - doesn't stop it hurting. xxxxx

[BenLes]

Berthy, my heart goes out to you. I was diagnosed at age 33 when my youngest was 9 months old. However a year before I'd had a miscarriage and my so called friends treated me like lepur when they found out. It wasn't until a few months later when I bumped into a couple of them and they asked me how I was that I was able to set them straight. They both rang me that night and apologised for being so thoughtless. It obviously didn't change anything with regard to the miscarriage but the fact they realised how insensitive they had been made me feel a little better.

I'm a teacher now with a line manager who just" doesn't care" about my condition and I've been having a rough time but I've decided that I will not allow her to bring me down. I'm on half term at the moment but when I go back I'm going with guns blazing. She will not win. I know you're not in that place yet, but you will be some time in the future. In the meantime, do what's good for you and don't try to please your'friends'. It should b them trying to please you. Look after yourself, you will succeed.

[Berthy in reply to BenLes]

I'm sorry for your miscarriage, I really am. I know how much that can effect a person and if i could hug you, I would.

Your line manager needs to get her head out of her arse for lack of a better term, however - the more you can do to prove her wrong etc - do!

I really hope i do, I just really need to start accepting that my body won't do what it would, even a month ago, let alone a year ago. It's something that I got very depressed about not that long ago, but I've never let anything get in my way so far and it's just a case of not letting this get in the way either

[BenLes]

That's sounding much more positive you're words are very kind and comforting. Don't dispair, things will improve, it's not all a downward slide. I went for several years without medication and I'm only at such a low ebb at the moment because of all the crap goin on at work. You are pushing yourself hard at he moment - with our studies and trying to carry on with your life as you should be able to at your age. Just try to ' go with he flow'. Enjoy your good days and on the not so good ones take things easy. Learning to ace yourself is really important. I was lucky enough to go to a pain clinic for about 6 or 8 sessions. Most of what was discussed was just common sense but it sounded so much more useful coming from someone else.

Good luck with your studies, hope all goes well

[Berthy in reply to BenLes]

I try

I'm in so much pain today but I was put on some new anti-depressants the other day and they already seem to be making an improvement to things - something I really thought wouldn't work. Yay!

I've always gone with the flow, I must admit, i probably should have been more bothered about my GCSE's and such but I got everything I needed to get into college sand have the time of my life. Still undecided about university but oh well - as you said' go with the flow.

I've never been to a pain clinic and I've never been offered to attend one, I asked about one but apparently they don't think it would be too helpful because I'm so young and most of the people would be older - don't really see how that was fair on me but whatever

It always seems to do so - doesn't it?

And good luck with your work, I home things have got a little better now hun xx

[BenLes]

Hi Berthy,

I dont know why you haven't been offered the chance to attend a pain clinic. However, I had been diagnosed for 16 years before I was sent! Also I saw a psychologist one to one, so other people being older shouldn't enter the equation.

Ive just been signed off for the second time this term because my back, neck and shoulders have gone into spasm and consequently it's difficult for me to sleep, every time I move I wake up. Consequently I'm not much use to anyone during the day!

Just take things easy, my tutor gave me some advice when I was doing an Art foundation course - What you don't get done today, do tomorrow. What you don't get done tomorrow do the next day. I realise now he was just trying to tell me to pace myself and not frazzle myself out. It's good advice, if you burn yourself out it will be you who suffers most.

Take care and stay warm, remember Uni is not for everyone, neither of my sons chose to go, even though they were perfectly capable of it and they're both earning good money doing jobs they enjoy

[Hidden]

Berthy, I am so sorry you are in so much pain at the moment. Please go back to speak to your GP, take someone with you to support you if you can. Tell your GP you cannot manage your pain and need to be referred to a pain clinic. Your age is irrelevant, pain is pain for goodness sake. The fact you are young and in pain actually makes it more relevant in my opinion because you should not have to deal with this now. Sometimes when we are younger we need even more support and help because things can be harder to deal with.

Please try to insist on being referred, I know it's not easy doing this, which is why I suggested taking someone with you.

Please let us know how you get on my dear, we are with you all the way and will support and help you wherever we can.

Take care, wishing you all the best. (((hug))) xxx