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?
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Berthy
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First of all well done on going out and giving it some; that took courage and you did it.
Now your friend has sobbered up she is probably mortified that she left you and at what she said ... if she has any memory of it at all, don't let one silly incident spoil your friendship ( I could have done that twice with my best friend of 30 odd years - but a tiff wasn't worth loosing her over).
You are doing well to get to college and keep up. Who said you have to work full time 9 to 5? You may find working a 30 hour week suits you much better when the time comes, a shorter day or fewer long days may well be the best pattern for you - no disgrace there.
As for finding a fella - don't stress it, it will happen when it happens. Think of how many guys there are out there who are thinking the same thing over the problems they might have. My darling has curvature of the spine and he is just the most wonderful man on the planet, and because we each live with pain we understand what the other one is going through.
You took a hard knock last night, and understandably feel depressed about it. When I am down I start my Pollyanna "Glad Game"; once you start thinking of all the things to be glad about it lifts your spirits eg thinking of this time of year, colourful trees, bracing wind, crunchy leaves, starry nights, fireworks, hot steaming chocolate drinks, warming stews ..........just to get you going
Hmm, courage might not be the word my mother used at 11 at night (':
Thing is, she wasn't drunk and I've had no form of communication or any attempt to get in touch with me. And according to facebook, is going to Leeds with her new best friend tomorrow as well, so it's not as if she's not been able to text of get online. But whatever, if she wishes to apologise or whatever then I'm sure she's capable.
hmm, I suppose. But still, financially I don't know how I'm going to manage :/
You write like your writing your own book and i believe that you should copy and paste and keep for your path along the way (may sound daft) but being so young your diary will have every moment and ups and downs.
I completely agree with Julie!! she could not of worded that better i do not really need to put much more on to this .
except maybe the friends i possibly feel a little different, however they still hae the rite to 'enjoy' as much as when we think of friends we think that they will stick with us no matter what and if we go home they will too to be there for you (this is what i would do) or atleast make sure my friend is ok at least and then go back.
We was on holiday last year and we are in our 40's couple of occasions where 1. i was not feeling too good one day but like yourself i still went a head and gave it my best shot to go out with the girls (at this time i had no diagnosis and was living unknowingly) i just could not stand the pace in the rock pub (which was fab all dedicated to Marilyn Monroe) i have odd photos too playing pool and i tried but my arms and hads were in so much pain but i smiled and i could not drink as much as i tried to, to fit in..why at my age still i don't know.. i decided enough was enough and apologised and said to my friends i must go back as i cannot stand anylonger and i had provoked the pain more by trying to play pool, they offered to come back and i said NO!! do not dream of it i will be fine and sleep it off, so this is what happened i went back with the lady who is in her 70's who came with us she fitter than most of us but has 'Angina' she had lost her hubby a matter of weeks before we went on hols (she is my customer and my cousin cared for her hubby and my other cousin did her nails etc) so when she heard i was going away she simply asked to share the flight and get her own apartment ..i contacted my friend who's apartment it was and she said was fine for her to come.. we had a great week a few up and downs of not all contributing as much as should of done ( i was the one with the bad neck and lot of pain and ended up doing all hte cleaning ! since i run a cleaning business i could not allow myself not to) some did not help out as much as they could whether on holiday or not. But we ENJOYED it and no fall outs.
ok so the other incident was my other friend who had some bad news regarding her hubby and his work he lost his case regarding his job whilst we were there so she was mortified it was an extremely dramatic moment! but we all there for her and we was going out that night and we offered to stay in over and over and she took huff and said NO so she was left alone and we went out but one of the girls went back early to go to bed and my friend was still up, by time we got back she was still up and we talked. she just needed to be alone it was on that same day we sat beside the pool and she distanced herself from us all and we felt awkward but she was happy to be left alone.
We find ourselves in circumstances at times unpredictable and whether good or bad we stand by the friends no matter what and your friend will probably come to you and see how you are and i would leave it and just act like it was a moment that was a hiccup.
if you can stick together then that is great.
I have had 2 special special friends who i did think were so true and in the past 2 and half years those 2 very special friends are 1 is now deleted from my life as just vanished finding a new friend with more bubbly and out going personality (what i used to have) the nights out have stopped for me as i cannot cope with the atmosphere anymore and i think everyone thinks that you will get better and its temporary, they think your boring or just not interested and so they stop inviting you (this i have noticed) you still want to be invited even if you do say no. that friend does not even ask how things are and now i believe that friend can be deleted..that friend will ahve to come to me now and apologise as i have given chances.
the other 1. is my neighbours daughter treated like a sister and becaues i not a drinking having fun as i did bring attention to her parties and that is how she got other frinds going as she would say i was going ohhh cool yes we be there if carolines coming! she cannot cope with how i am she does not even come round and see me she gets upset but as much as i tell her am ok and just becaues i do not want to go partying anymore seh can still be around me , but she wont..i feel like a leapor!!! so now i just say hi how you doing when summer comes and we sit side by side in the gardens joined. Her mum comes round every wk to see me and she is like a mum to me she always asks do i need any hlep and this woman is in her 60's like my mum lol but she helps me with things shoping and offers to help cut my grass if i cannot do it which i cannot do it anymore. making toast is awkward (how simple is that job) but on the outside look like i could cllimb a moountain, make tons of toas lol .. its the hands that are the problem pain and weakness my hands in space somewhere.
have you been tested for Hypermobility?? i have BHMS/EDS 111 as my legs were one of the 1st things going heavy and dead and giving under neath me not feeling them .. it goes on brieghton score if ou look on HMSA site you will see. xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
I write as a hobby, that's probably why it comes across as a book
Yes, that's what I would have done and still would do, but i suppose different people are 'wired' differently really..
I know what you mean. I'm done with chasing around after people, giving and giving and getting absolutely nothing back. i get walked all over and I have done all my life. It's got old, tired and boring. I'm fed up of it all.
I've been tested fr it yeah, I've not got it, I was told by someone on here to request to be tested and I'm in the clear. Well, for that at least.
I guess I jst needed somewhere to vent, you know?
I also did something to make it perfectly clear how unhappy I was with them both, I shared a picture saying "having best friends that are always there for you" with "lol, what best friend?" above it and both of the girls concerned commented on it being all naive and making it seem as if they've done nothing wrong, that I'm being a bitch etc but whatever..past caring now. I have friends on here and other friends online that understand and actually care, like force me to talk even when I tell them to fuck off xD which to be honest, I need or I bottle things up and push myself to breaking point really..
Hey, I know how you feel there too. Feed up with trying..and then just..nothing. I know what it's like to feel used.
I did a similar thing after what happened with me: Facebook post saying 'it's when you're at your lowest you know who your true friends are. The ones who stick around. Not the ones who ignore you and come into your life when it suits them'. I got 3 likes so obviously people understand. I don't have FB atm but I'm getting it back soon - if you want I'll add you when I do? Up to you. xx
Warm, soft, gentle hugs ^ from me! So after reading your message it brought me to this blog (thought I'd comment here first as you know how much longer it would take for me to reply to in a long message )
And as I was reading it, my little heart was breaking for you. We're always so chatty in our emails - but then again I knew things must be difficult because I know what it's like putting on a cheerful front when feeling almost crippled with sadness.
I'm really sorry for all the distress that you went through last night and the way you had to go through with it on your own. It was horrible the way your friends treated you like that and if there's anyone who knows what it's like to be dropped like that I can DEFINITELY relate. But listen to me when I say this - you WILL find yourself true friends - sometimes we have to be tested in order to find out who are true friends are - the ones that stick by you at your absolute lowest. But we have to go through sh*tty things for that to happen and it's a cruel lesson to learn. If it's any consolution, sweetie, I'm one person who knows what it's like to be 18 & wanting to live a fun, normal life, but be restricted by Fibro - it's disgustingly cruel to be the person watching from the outside, this has happened to me on a number of occasions too. And I know what it's like to be dropped by friends just because, through no fault of your own, you're not able to conform to their way of life - but take it from me - these girls - they are immature, niave, ignorant - they don't understand. And I promise you this - one day these people will find themselves into a position where they need help and THEN they'll understand. It will wake them up, make them realise. Some friends you just realise are not worth it - others it can be hard to tell because it could just be lack of understanding. When I told my friend I was feeling stiff all the time and couldn't understand why (pre.diagnosis). Her reply: 'I'm not being mean, but maybe it's in your HEAD.' It was hurtful and frustrating - but she is a good person. I stayed friends with her, she has been there for me before. She just wouldn't know. It depends on the person in question for you to make that judgement.
We grew up faster then them because we experianced our Fibro from a fairly young age - which I believe (tell me if I'm wrong) changed our whole outlook on life. But trust me on this - you NEVER know what's going to happen - Fibro is forever changing - constantly evolving it goes up and down like waves on a frequency chart - just the same way as we are still developing into adults- our bodies are constantly changing, hormones raging etc. we don't know what our health is going to be like in 10yrs, it might be better, or maybe it will be worse. But it's constantly changing in the meantime as well - there will be times where it flares up, and times where it really calms down - maybe last night was just a particulary bad flare up - so don't limit yourself with thinking what you will be able to/not be able to do in a few years time - just tell yourself you never know. And maybe it sounds like I'm clutching at straws here Hun - it may even sound like, I, myself am denial about living with Fibromyalgia forever (sometimes it feels like I am) - but they MIGHT find a cure in a few years time - we do seem to be on the edge of it. Medical science is increasingly getting better. Think about it, it's amazing what they can do these days that they couldn't do 20yrs ago. The pace is moving faster too. So what about the progress within the next 20yrs?
It sounds like your under an overwhelming amount of stress at the moment - especially with college and pressure of making decisions. I know what you mean about work and Fibro - my Dad, and I don't think he meant it unkindly, told me I 'couldn't go on like this, otherwise, you'll never be able to hold down a job' I am trying not to think about the future, just the here and now (even if then it can be crappy sometimes). Have you thought about taking to them about your struggles? Maybe they could work something out for you where you could work at home part time. Or maybe even slower the course pace - so that you're not forced to finish it in the set time like everyone else - you could maybe become a private candidate so that you tailor the course structure for your own needs. Julie said so to me in a blog I wrote about her daughter taking an extra year in order to take the the pressure of/do better. Or maybe even private tutoring? I know someone with moderate/severe ME who does his Alevels with a private tutor for an hour a week - he struggles with fatigue but he hasn't lost hope. You cannot and don't deserve to live on like this; being put under exactly the same expectations of someone who is painfree, clear minded and bubbling over with energy - ( cruelly just like any other 18yr old should be.. :-/) it is not fair on you and you should be entitled to extra allowances/support. You could maybe speak to connexions as they are experianced with helping all sorts of young people with their careers and their studies - they have helped me before. Tell them the situation you're in and they will find effective, practical ways of helping you move the best way forward. If you find a good way of working with your symptoms your energy levels will improve dramtically and it might even aide you in feeling better long term. Stress by no way helps Fibro - so you will be able to break the vicious cycle of stress=flare up/flareup=MORE stress and so forth.
As for me, I am in my third & last year but am not under so much stress because I actually have already done my psychology Alevel in the first 2yrs and am redoing it. I am coping badly still so I will have to talk to someone if this doesn't relent soon - but the teachers are trying to support me best they can.
To answer your question from the email you sent me - you're good at using words to express your emotions, in other words, as Julie & my fellow fairy (Fairycazzie) say - you are a very talented writer. That brings me on to my next point - they'll always be other options - one door closes, another one opens. Fairycazzie said to the same thing to me about coping and pasting my blogs and making up the series into a book so who knows? One day we could be famous authors. Imagine that, Beth? You and me at book launches together. It'd be us two sticking the 2 fingers up at Fibro - because we managed to make a living out of it. It'd be much more fun than working the run-of-the-mill 9 till job. Who wants that anyway? We deserve better.
One last thing. I am really sorry about your friend - I don't know the ins and outs as to say what you should do - let it go like Julie says because it was a blip. Or come to the conclusion that you don't need her - it's not my place to say. It sounds like she meant a lot throughout the years so you must be really hurting. My friend has a habit of boozing and drops me because I don't do the same - he even called me weak etc. - he knows nothing about my Fibro (like he even has the right to know) but he realises something isn't right, he must do. Anyway, after years of coming in and out of life, depending on whether he has problems or not (i.e. he always comes crawling back if he needs me, but not when he's having the time of his life. He has an Ego-complex and thinks he's even more so different to everyone else - thus resulting him showing less interest ) followed by 7months of sexual pressure, he now won't speak to me. This is after 5yrs of what seemd like a very close friendship: (well maybe not so much the last year) and I trusted him with my life. So I know what it's like to be dropped. I have come to except that I won't be seeing him again as he literally won't speak to me. He's completely shut me out and I don't really know why as I have only ever tried to be a good friend to him.
I can promise you one thing Beth: I will ALWAYS be your friend. No matter what. I'm not saying I will replace anyone - but I will always be here for you. We're all here and care about you darling! I'm an 18yr old girl living the effects of Fibromyalgia - if there's anyone your age who won't judge you when your symptoms are at breaking point, or when you can't do the things your expected to do for someone your age - then it's me. I know what it's like to be accused to being lazy (or boring. Or an attention seeker) and to accused of using these symptoms as an excuse to get out of sixthform. Meeting you - it's one the most comforting things I've ever experianced. I wouldn't dream of letting you go (unless you ever told me to of course). I wouldn't do that to anyone because I know - I KNOW what it's like to go through what you have described above. ^ I flinched at almost every line because it was something I could relate to in some way - and I felt the pain of it happening all over again, I felt the pain more because I know it was happening to someone else. Someone kind, caring and who in no way deserves it. Life is a cruel b*stered isn't it? If you ever need to talk. Know that I'm always here for you.
Hope you feel better soon sweetie. Much love and wishes of healing to you <3
Don't worry about me sweetie I hate to be a drag though!
I'm sorry - this is going to be a short reply, my concentration levels are through the floor. It's taken me 3 hours to read and reply to all of the comments on this blog...so sorry...
I nearly cried when you said that meeting me was one of the most comforting things you've ever experienced! thank you...seriously.
I hope you don't, and I won't leave you either. I promise sweetie
Life is always cruel, unfortunately nothing will ever change that. But hey, you take the good with the bad. You have to.
Much love and hugs darlin' <3 xxxxxxx
Oh you poor darling Berthy, my heart aches for you! I can feel your pain through your words. It is quite true what Fay says, Fibro makes you grow up far too quickly, it's a harsh condition for a young person to deal with, it's hard enough when you're older. I feel very resentful at times and have to pull myself up by my bootlaces when I hear of cases like yours and Fays.
Berthy just because you are going through a particularly hard time right now doesn't mean you will definitely get worse, your condition may stay the same, you may even improve. There are no guarantees with Fibro, no-one can predict how our futures will go or what will happen. Even with a crystal ball, no-one knows. Each case is different - we may have similar symptoms, but we are all different and we all deal with it differently.
At your age many things can feel embarrassing, that's all part of growing up and it does get easier. I am at the stage in my life where not a lot phases me, there have to be some benefits to getting older. You are dealing with things better than you realise just by the fact that you are here and surviving. You have sought support by joining us which is a wonderful medium to support you. We all understand, we all care for you and we will all support you through this.
It would be a good idea to speak to your GP Berthy just in case you need a meds review. Having the correct meds at the right dose can make all the difference. You could have more energy, be able to sleep better and generally function better, also managing your pain better too. This adjustment can make all the difference to your general well being, your quality of life etc.
Have you been referred to a Rheumatologist by your GP, this might be worth trying to for another opinion regarding your symptoms, treatment etc.
If there is anything at all we can help you with at any time, please ask. We're always happy to help where we can.
In the mean time, please take care of yourself, know that we are always here for you. Here is a big hug for you (((hug))) xx
I was always more mature then my friends, mean yes I was a typical teen and not mature by any stretch of the imagination, but i was still old before my time..and now, I can barely stand anyone my own age, there's the odd person I can get on with; Funkyfairy for example but I've never really fitted in maturity wise. It never really bothered me though - I always just felt above their taunts etc.
I know,I feel rather silly now for being so dramatic etc, and I know things AREN'T that bad, it's simply my mind exaggerating things to the point they get me down so much and well, like i said: I never thought anything would EVER nearly push me to cutting again. It's the fact I'm having to come to terms with the fact that I can no longer go out or spend real time with my friends etc, it's so difficult - as I'm sure you are aware. Sometimes just shutting yourself away is the easiest thing. And living at least 30 miles away from the nearest town, let alone the nearest friend, it means nobody can even spontaneously turn up to cheer me up or anything. Sometimes a god send, sometimes a horrific curse. You know?
I normally manage to brush things off. I'm so clumsy I've had to adapt to doing so :') but I guess it was the fact I was in a devil onsie and probably looking terrible (they're barely flattering on anyone, let alone someone of my figure!) and they were the people I aspire to be like, there was a guy that was 'hitting on me', for lack of a better phrase and one minute I was there, dancing with him and the next I was on the floor, wanting to be swallowed whole by it. Ugh. Oh well, I always have to do something to embarrass myself at some pint in EVERY day, so really, it's nothing. Water under the bridge
I've only just recently been put on the gabapentin, they wanted to give it three months before reviewing it and seeing how I'm going on it, and I KNOW my old doctor DESPISED me because of the way nothing would ever work. She was convinced I was all in my head and saying it's all psychological etc. And until I snapped and refused to leave her office until she stopped dismissing me. That had some sort of an effect...then she left for maternity leave and this new doctor actually listens, I wish she was staying, so much! We always want what we can't have
Yeah, it was a rheumatologist that diagnosed me, and I've got an appointment with them next week as well, I'm going to ask about the small-fibro polyneuropathy (I think that's what it's called...) as well, there was a post about it on here the other day and I mean - anything is worth a shot, right? But anyway, anything that's treatable is better then fibro. i wouldn't even wish fibro on my worse enemy - and I HATE him. Oh well
Oh, Berthy, what a sh*tty night for you! My former 'best friend' did something very similar to me - not because of fibro, though, just because I didn't fit in with her sporty boyfriend, so I was dropped when he proposed - and I spent ages crying and mourning 15 years of friendship that had been tossed aside.
Firstly, definitely see the specialists to see if there is anything medical that can be done to help. And secondly, if your friend was worthy of you, she'd have been by your side at that gig, helping you to enjoy it at a slower pace, not calling you boring. I don't care what excuse she comes up with - that's callous and insensitive.
Like you, I used to cut myself, and still bear the scars, and I know how hard it can be to stop yourself turning back to it when life kicks you in the gut. Just remember that you're worth more than that, more than a friend who abuses your trust, and that, when you meet a boy who really loves you, your fibro won't stand a chance of holding him back!
Stay strong, and stay special. PM me if you need anything. xx
Thank you SootyB - I forgot to add to some things earlier but you got there first.
Beth there is really not much else I can add now..just wanted to say remember what we all said - you are worth so much. And you are strong. Remember Arelie too and all she represents to you. She is so beautiful and there to remind you of how far you've come. And she is with you all the time now.
I will reply to your message fully tommorow. Just wanted to say about that I'm really sorry and I didn't mean it if I ever came across as insensitive or unsympathetic in my last email. This happening a lot, always say things and then I read them back and realise how badly they can be percieved - millions of things were missed out too. Reading it back I wanted to let out a jaw clenching grown at some of what I'd written - how it sounded. It's all wrong. I worry about hurting other people's feelings and also sometimes reading back I worry that I come across as arrogant or a complete cow. So I want to make sure everything's ok. I guess it's the one things that frustrates me most about Fibro - not the pain - the fact that it makes me respond differently towards situations or tries it's best to interfere with how I form relationships. Anyway I'll stop rambling now. I'll speak to you tommorow. xx
Mmm, part of me thinks that but then there's the side of me that doesn't want to lose her, I don't know what I'd do without her....I really don't :/ but I know that I'm nothing to her anymore, when we're alone together it's great! But the second her new best friend comes into the equation, I'm old news.
I got Arelie, my butterfly over some of the scars on my wrist and would HATE myself if I cut over her (there's a picture of her in one of my other blog posts, titled something to do with my 18th, if you want to have a nosy :)) and I know I can't go back, because I get SO easily addicted to it, I would be screwed really, and I can't put myself, my family or my friends through that again. I just, can't.
I'm stronger then all of that now, Arelie has made sure of that, and she's ensured that I remember I'm ALWAYS stronger then that.
Thank you, I'm sure you know what it means to know you have people at times like this but still - I will never be able to express my appreciation properly, I know that. But still, thank you.
Take care, stay safe, Beth. The same applies; I'm always here xx
Beth, we seem to have two of these threads running at the same time. I realised I had replied on this one. Both threads have the same title.
Here is the link to the other thread so the conversations flow and we know where we are posting -
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I HATE MAGICIANS (SORRY) !
Fibro Fog
Why is it so damn hard!!??
Sorry I've got to get it out !
well seems like thats the last of my friends gone!!!
