There's never been a time in my life where I've been this bad. Where I've ben unable to even go to the toilet on my own because I can't stand up again. Where a 19 year old, young woman has been left stranded in bed, because she's in f****ng pieces.
Where she's beginning to lose the fight. Where walking with a stick is something becoming a reality, not a possibility.
Where a teenager, can't move around her house for fear of being locked, stuck in a certain place by her own body.
Where standing to have a conversation is completely impossible because your back will collapse.
When you appear so rude because you have to sit, or you're not really listening because it's like a million little knives are being rammed into your back and twisted over, and over again.
Where the cramping is so bad you have to drug yourself to the eyeballs so you can't feel, but you can. Nothing can touch that deep, burning that starts from your bones and screams through the tissue, muscles and fat to catapult itself into your nerve endings and leave you wanting to be dead.
When the drugs, that are a necessity to take, are making this little girl, hallucinate to the point she thinks she's going to be mauled by vicious dogs.
But it never stops. It will never stop being okay that this is happening to young people with fibromyalgia, because nobody cares.
You can't see it, so it's not real. Would you fight that argument to a person with a cancerous tumour that you can't see? No. Because the knowledge and information available EVERY SECOND OF EVERY DAY tells them it's real.
The word needs to be spread.
So we can move forward, out of wheelchairs. Off crutches and without walking aids, because someone, somewhere has found it.
They've found the cure.
Because we fought for recognition.
Please, fight in our army.
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Berthy
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Wow Berthy stop you must please edit your post quickly you have a swearing word they are not acceptable So please you must take them out replace with ******** strict no swearing policy!!
I have read your message and my heart goes out to you. It is bad enough coming up 60- but your age it is just ****cruel!
I guess you are not on your own are you?
I think it is very important that you ring your surgery and ask for a house call you need your meds sorted and you need some help with your anxeity. Please do this now. Let me know you have managed it
Does you Mum live with you by any chance? Do you get on with her? I hope so they that is Mums can be wonderful and also terrifying pains as well.
Next you need a cup of tea sit up concentrate on CALMING DOWN si slow deep gentle breadths thats it, do you feel exhausted it is tiring having a good vent at the world.
I will be back on in 5 mins to see how you are doing or you can private message me ok xgins
After 20 years of not knowing which bit of me would be causing me grief each day when I got up I can honestly truly empathise and sympathise with you.
I agree with gins, Berthy, with respect to the editing please, but also with respect to calling your Doctor's surgery and requesting a house call so that your doctor can examine and assess you and then you can both discuss what will be the best treatments, medications and therapies which will be best for you in order to try and improve your health and wellbeing.
It is my own personal opinion that as fibromaylgia patients we need to help educate our doctors through letting them know how the illness is really affecting us, so communication with our GP's is vital to our care and support. Creating and having a support network of medical professional such as doctors, therapists and consultants, as well as family and friends, is crucial to gaining improvement alongside being strong and having the faith that we can push through it because for survival we need to
We are currently experiencing technical difficulties with our Mother site fibroaction.org but when the site is running back to normal there is an article discussing' how to help with communicating to doctors' which I think you might find useful.
It is brilliant that you think we need to spread the word as it is a sign of positive thinking even though you are in so much pain and feel isolated. There are ways to help raise awareness and I hope you don't mind me giving you these links
Private Iampain reporting for duty. That was rather tongue in cheek Berthy, and swearwords aside I know Exactly where you are coming from. Although I'm very very old compared to you, I am in a time of my life when I'm supposed to be able to do pretty much as I please, kids all grown up etc, but instead I've spent most of the last month in bed, able to get up only briefly.
Please don't give up, like you said, if we fight for recognition, on the home front and in the public eye, someone , somewhere will eventually come up with a cure. Get your. GP on the phone sweetheart, and let him or her know what its like being you.
My only trouble with that is that my doctors are utterly useless. There's all sorts of excuses about seeing people and diagnosis and pills etc, talking to someone is genuinely entirely pointless.
Thank you though.x
Obvious that you are ready for a fight after sitting up last night with my aches being the worst they have been I can sympathise with you. Difference being I only wish I was 19 again (being a good bit older) My daughter told me, on a day I was feeling very sorry for myself and ranting that I couldn't do the things I had been able to up to last year, God only sends you what he knows you can handle, no more than that. I snapped at her that in my case he must really hate me because he seems to be sending me just one thing after another! She just smiled and said that obviously I was loved and he knew I could handle it!! Sorry, that won't make you feel better I didn't either but it made me laugh that my daughter was trying her best to make me realise that I was stronger than I knew and would get through the bad days She tries to understand how I feel, but when you don't live with Fibro, it is difficult. A good rant gets it off your chest and makes you feel slightly better, and where better than here to do it That deep breath you have been advised to take is a really good idea after you have had a good cleansing cry!! Better all that negativity gets out. Do see your doctor to get your meds sorted, and I really do hope feel better and in less pain very soon. Big giant air hugs to you, Susan
As above, the doctors thing is nigh on impossible because they're absolutely useless and pretty much do everything they can to do nothing...if that makes sense?
Mmm, that's a thought that crosses my mind occasionally. But I normally brush it away and just get on with it, not being religious and all.
Sounds like you need to change doctor. Not the first, some GPs seem oblivious to fibro, there are too many reports of unhelpful health professionals on this site. Even with out a real cure, there IS relief
Unfortunately I've changed doctors about 5 times in the last couple of months...I've run out of options now. It's a case of picking the best of a bad bunch really.
Hi berthy, to be honest I not religous myself, but my daughter is a good cry every now and then and a little wallow in self pity can go a long way. Then back to being your usual cheery self my mum use to collect old chipped crockery and then when frustration got the better of her she grabbed them and had a smashing time each to their own. I see you have been advised to change your gp, if that is not possible you should lodge a complaint with the practice manager.Hope you are feeling a little better now, big hugs, Susan xx
Join the club I think we all go through this I do daily wondering why ME when my first granddaughter has come along when my life should be just dandy, haha. Instead I get fibromialga, RA, Osteoarthritis both hips, Ostepenia, pernicious anemeia and thorasic sholiosis, and thats all been diagnosed this last 10 months, how can I tell her sorry little girl nanna cant pay today because shes gotten old too soon. Yes We all have those days, but we have to rise above them and fight it, or hey they may as well cover us over now. Sorry to be so blunt and seemingly heartless but, I have to think this way or I would never get through my days or night, which may I add are very long sleepless. There is people out there alot worse off than I. So fight the urge to give up and get on with your life any way you can. x
A BAT allion of my latest friends is on the way with concerned sympathy. When you get to my age it somehow doesn't seem so cruel but I think I fully understand your frustration. I agree with gins, you need medical attention soonest, there's something not right with your meds. I wish there was a cure, if there was we'd all use it. But it is possible to have good days, it's a case of getting things in balance. I'm sorry I can't wave a magic wand and say "expelliarmus" to the fibro or anything else you have. Do try to calm down as this will just let it win and we don't want that. Please feel free to PM me or a volunteer.
I think your Harry Potter reference just made my day. You have no idea how much I just smiled at that :')
Getting an appointment at my doctors is like plaiting p**s basically. And getting one with a decent doctor is...ugh.
Thank you darling
Berthy,
We have sometimes all been exactly where you are at the present time. I feel your pain in every word you are using in trying to express your pain. I have been there unable to go to the toilet also and my husband decided to bring the electric scooter inside to get me into the toilet. I have since brought a antique commode chair for the real bad days. I had to swap Doctors under the pressure from my Psychologist as she said I needed someone who understood Fybromyalgia. I finally took her advice and my new Doctor has a patient already and he understands so much and is so empathic to my pain and mental health. I also see a psychologist monthly which gives me an outlet other than my family to talk about how rotten I feel. Maybe Berthy this could be arranged for you also.
I have at times had to crawl on the floor, sleep even on the floor on a sheepskin rug. I found the sheepskin rug stopped the horrid painful sensations which was good. I have a niece also who is in her 30's with Fibro, I am 55 but she has had her's since she was 16. It's a long road when you are so young. As the other ladies have said you need to have a review done on you medication as no one should be living with this much pain. It sometimes is a fine balance.
Unfortunately seeing a psychologist is impossible for me. I've been in and out of them from when I was about 13. I cannot do it any longer. I refuse to talk to people like that. Which may seem childish or silly but I can't. I simply can't.
I can understand Berthy, we are all different and it is not childish or silly honey if you cannot open up. I do hope you will find a Doctor who is compassionate and up to date with our condition. Please let us know how you are feeling tomorrow. Gentle Hugs.
My eyes teared up reading your post. I have felt and thought those things often, as probably most of us here have. To be saddled with this illness at your age must be so difficult to bear and to accept.
I have been told by a Neurologist consultant that he never heard of Fibromyalgia causing anybody to be bed bound, so either I am a malingerer or misdiagnosed. Another neurologist told me that the Pregabalin was causing the trouble. I said I didn't think that likely as it actually helped a bit and these same symptoms were why I was put on it in the first place. He would do nothing more than a simple 10 minute consultation in his office before sending me away.
My point is that, like you, I don't understand how a condition as common as ours and as horrible as ours is still something most people have not heard of or think is 'made up' because we are lazy or whatever else they want to think is our excuse.
You do need to find a doctor who hears you and is willing to continue working with you around all the corners and through all the bad patches with the illness and the meds. I have not yet found a doctor who does that, although my current one is better than my last. She visits me at home, and talks to me on the phone, because she knows how tiring and painful it is for me to try to get there, and that I have to have a volunteer bring me to the surgery. I wish I had switched doctors sooner. Being heard and having a doctor willing to visit me at home, as yours should reasonably do for you, makes an enormous difference.
Why is it still so unknown? I think because the medical profession don't like to deal with things they have no direct treatment for. This approach to illness is problematic and time-consuming for them and they don't like continual failure to make a patient better. Not much we can do about that, but it's good to have each other on the forum as fellow sufferers of this illness, and for that I know you and I are both very thankful. There are other reasons behind the lack of medical knowledge and public awareness which I am sure you can read about elsewhere. It's a lot to do with this being difficult to treat and with the lack of funding for that as well as research.
I would suggest that you try to find a caring counselor who will take the time to listen but also to learn about your illness, so you don't find yourself having to justify or keep staring at an uncomprehending face.
You might also find a volunteer from a referral by a local disability charity. They might be able to help you with the process of getting a better doctor, better treatment, and maybe a good counsellor. You deserve all the best of everything!
I wish you the very best, and I believe that with your determination and clarity of mind, you will find your way through somehow.
Hm. I've been wondering about pregablin too...I hallucinate a LOT on it and I'm not safe on it really...I might talk about being taken off it and finding something else.
I thought I did have one and he was AMAZING to begin with...but I can tell he's gradually getting more and more annoyed and irritated with my recurring visits , pretty much on a weekly basis so...I'm attempting to do it on my own now.
I must have been typing my reply as you were typing the reply to the previous person who commented about a psychologist. Regarding your statement that you can't talk to them anymore, I don't think it is childish or silly. If you find that it doesn't work for you, there is no benefit. I have had to take a few years break from it myself, because I was working so hard to deal with it all and I just needed to rest my brain. There are some nice websites with sounds that can be calming. Someone on here was recommending them and I did listen to one which helped me that day. Sometimes I just do art, because that gets my mind occupied, but when the pain is so bad that you can't do anything, I agree with you, that is close to unbearable. You have my thoughts and I hope you will soon get some relief.
I definitely feel you with the art thing. I'm currently studying a BA (Hons) in fine art. And writing. I do a LOT of writing and work it into my Art...something that does help. Especially with my anger and frustration issues.
I've been in and out of them for around 7 years mainly for mental issues after being abused as a child, and my mind just won't allow it any longer. I guess it's the mindset that I don't want to spend the next 50/60 year's relying entirely on someone else to do anything and absolutely everything...if that makes sense?
I've recently found an app that plays numerous different calming noises and tones that actually aid your drifting into different stages of sleep And it's helped a LOT.
Hi Berthy I a?m still here you have had lots of advice from lovely people. How are you this evening? Are you still feeling cross with life I actually know how that feels. I have had a day from hell Sorry I keep having to go to the Loo bad as you know, Hey well never mind.
So are you ready to battle on - thats what we have to do - don't we
Morning Berthy, You mention an app with soothing noises could you let me have the details I would love to have a listen, Yes we all need calming xxgins
Hi Berthy and welcome. One of the great things about this site is that you are able to let it all out when you need to. I do it myself! I feel for you being like this at such a young age. I know what it is like with gp's. Mine had me down as hypochondriac for years before I finally got diagnosed by a rheumo cons. As for the hallucinations, I had these when on gabapentin, my gp changed me to pregabalin and I was fine - people are different though, posters here have experienced the opposite. I also had hallucinations on tramadol, but again, many on here swear by it. I am sorry if you have posted about your meds, I am posting on my phone while tea cooks. I really, really hope you get something like your old self back, I know what it's like to grieve for a lost life. Big, gentle hugs, and hopes for better meds, better gp's and a better undertanding of fibro. Keep fighting! Julie xxxxx (still fighting the good fight!)
Yeah, I was told from 11-16 that it was growing pains...despite VERY rarely actually growing *rolls eyes*
They really are idiots some times.
I have made an emergency appointment for Wednesday after Budgiefriend saying she'd been informed pregablin could make things worse...because if it gets any worse than this I'll be hospitalized. I've been hallucinating progressively badly on the pregablin, so I think I need to find something else now. It's just pointless being on something where the side effects completely unbalance the benefits of the drug.
Thank you sweetheart, it helps knowing people care.
Any time hunny, hope the appt goes well. Let us know what happens, I'll be thinking of you, hope you get your meds sorted, love and gentle hugs, Julie xxx
My sister has Fibro as I do. Her symptoms are nothing but pain from the highest point of the pain scale. She tries to get up doing things and she ends up collapsing onto the floor in excruciating pain. Other times I look in on her and she is in her bed crying and thrashing about so I called the hospital to see what to do and with the help of 2 of my brothers, we took her to see her gp. The doctor hated to put her in the hospital but because there was no pain pill strong enough to stop her pain, she had to have injections or by IV so we chose to put her in the hospital to be treated for pain. It turned out that she has an infection in her legs so it wasn't just pain. I wish that she wasn't so stubborn that it took so much energy out of my brothers and me, and HER. Now she is out of the hospital and the pain is still too great for just pain pills so she gets injections if one of us can take her to the office of the doctor. I think that it's smart to get to the doctor before it reaches the point that my sister was at.
I've been referred back to my consultant and I'm going in again this afternoon. Hopefully something will be sorted through that. I'll never let it get that far, don't worry. Thank you for sharing your story <3
I sincerely hope that you are feeling a bit more like your self now? I can understand how you felt as most of us have been in this position at some point with ineffective GP's and non-listening consultants. I genuinely hope that the next time you see you GP that it is a much more worth while experience.
What a lot you have had to deal with in such a short life already! It is not always easy to get good support, even with counselors and psychologists. The best of them should help you make your own decisions and encourage you to learn to listen to your own body and mind when moving ahead. Some do a good job of that. I used to think after I visited a couple that my cat was just as good or better and didn't cost anything. The cat would listen and purr and cuddle was available for consultation 24/7 and gave unlimited, unconditional love--or nearly unconditional, so long as the food bowl was filled. Some counselors would say the same predictable things like "How does that make you feel?" "That must have made you sad." etc., and didn't do what I needed in a counselor, which was someone to engage with me in a supportive way and discuss things with me rather than just listen and smile. But I have had some very good ones also, who helped me a lot.
I have had issues with domestic abuse in my past, too. It is easy for a doctor also to blame mental and emotional problems for some physical illnesses like ours. You have to be so persistent and develop a lot of courage to keep looking for the right answers. My previous GP used to blame even some kind of rare psychological phenomenon for symptoms which I could tell were being brought on by over-exertion when she kept pushing me to get up and do things. I could see when it would happen and that it had nothing whatever to do with my emotional state.
I am still trying to get my GP to refer me to a Rheumatologist to be assessed for ME/CFS, as I have not been seen by a Rheumatologist for over 7 years, and I feel that I was never properly assessed for anything other than Arthritis and Fibromyalgia. Maybe you have tried that already. As your symptoms are severe, it is a possibility, and might make a difference in how the doctor chooses to recommend treatments. I guess that if you ask directly, a Rheumatologist can assess the patient for it. I am not sure.
So glad you have your art and writing, and that you are also ambitious to do a degree. But maybe relax a bit more and allow yourself to get this physical illness under a bit more control before putting more pressure on yourself. Maybe you can find a way to do that with the help of advisors at your school.
Hi Berthy. I was diagnosed at 18 I'm now 21. I fully understand where you are coming from I was the exact same. I know the feeling with useless GPs but since I have been going to pain management regularly I'm a lot better. Do you provide a caring role for your parents? If you do, do you have any carers support for you? Have you had an occupational therapy assessment for you? Do you spend time doing what you like to do? Or would you like the time do to more or have the opportunities ?
I have found on bad days making time for me helps. De-stressing or trying to.
I'm a social worker and tbh I don't come across many people out ages that need support but if you need anything Berthy whether it's someone to talk to or professional advice you know where I am. On here this time most nights due to rubbish sleep patterns like so many. Chin up be positive your a beautiful girl with so much potential don't let anyone ever tell you otherwise. Gentle hugs xx
I do, and no there's no form of support for me. I'm assuming it's because I'm still in the process of applying for PIP (formerly DLA) and I'm not 'officially disabled' and thus not eligible.
No, I've never heard anything about occupational therapy in regards to me and honestly don't know what it is..what would an assessment involve?
Yeah...I normally manage to get some writing down in the early hours of tge morning, but it depends on how drugged up I have to be that day really.
Where abouts do you live Berthy? you need a carers assessment ( not the always the benefit, carers referrals are through adult care for emotional support, advice and carers direct payments) the assessment depends on where you live. Here in lincolnshire you call the customer service centre who will ask you questions such as communication, mobility - difficulties falls, transfers, stairs etc, personal care - how you struggle in shower/bath/toilet/dressing, meal preparation, medical conditions and specialist involvement and community/family life/caring roles. You will then be asked to attend a clinic where you see equipment and talk about things in depth and are allocated a worker. But it depends on where you live I can help advise if you give me the local county council. xx Gentle Hugs
Sorry it's been a while since I've been in touch...it's you so I know I can be honest and hope you will understand. I just couldn't bring myself to answer your last email, it was brimming with positivity and I just had nothing positive to say myself, as I was going through a tough time at uni (in the email before I was referring to one or two good nights out and some new friends I'd made, however, things got worse shortly after with my health etc). You sounded so happily and settled into uni, living the normal student life, in spite of Fibro - I didn't want to be the one to rain on your parade. I was at a loss for words and utterly bewildered, if I'm honest, at how you were doing it because I just wasn't coping v. well with Fibro and the demands of uni (that said I got through the first semester with good results, so maybe I shouldn't be so hard on myself). I could come up with millions of reasons of why I never responded to you but I thought the truth would work best. Anyway, just as a matter of interest before I comment on your post, I'll let you know how I'm doing. I've made myself one really close friend at uni, and I know I'm going to stay in touch with her after. I did have another good friend, and was making more friends through her and getting to know them, however, I decided to distant myself from them and let them go - because too much baggage, ya know? I couldn't bring myself to tell them about Fibro and didn't want to be the one to drag them down, however, for a glorious few weeks I was in with the cool group, the group I yearned to be in at school and I know would still be in if I didn't have Fibro. The only reason I make things work with the friend I'm with now is because she suffers from depression and social anxiety, so it was easier to share something like Fibro with her, also, linking to her SA - I'm the only one at the uni that she feels comfortable around and so we've had a lot of heart to hearts.
Anyway that's enough about me. I'm sorry you're suffering so much at the moment. I hope you've improved over this past week or so and you're getting the help you need now. Summer is approaching us, how does that affect your symptoms? I know sometimes it can make it worse. From what you've described, maybe it doesn't make a great deal of difference, because what you described sounds so awful it might be difficult to notice any small changes in symptoms, I don't know. Is your post how your health is most of the time now, or just during a flare up? As for me, it doesn't matter how I put it but my health just hasn't been the same, since over a year ago, I don't know if I it ever will be. But you're right, we can't give up.
A cure is what we need yes, but I think that's a few steps further down the line and the first thing we need to focus on is increased awareness and increased social support for people with Fibro. I think the lack in itself is enough to make our symptoms sky rocket, if there was more understanding and support our suffering could be reduced to an absolute minimum. Then we can work on more scientific research and then, hopefully a cure. I don't know how long it will take and where to start, and being so young with Fibro (from one 19 year old to another), it sometimes feels like I've been convicted to a life sentence and sometimes I don't know where to begin and feel so over whelmed and helpless, I don't complain as often as I used to, but the majority of the time I still feel lost and as if I'm wondering around aimlessly. But firstly, the advantage of us being diagnosed so young is that we are the ones who are aware, with the addition that also have an increased chance of being the ones who will see the cure take form and consequently have to live with the condition for less time, compared to older generations who were diagnosed young (and who are so amazing to have successfully lived with this), secondly...secondly I've lost my train of thought, have been kyboshed by fog and can't remember what I was going to say. It's on the tip of my tongue goddamit and I keep thinking I'll remember it and then I forget again, I'll let you know when it comes back.
This is ridiculous, I HAVE to know what I was going to say...firstly, we're at the age we we'll see a diagnosis and secondly...secondly...*closes eyes and takes deep breathes* the other advantage of us being diagnosed at this age...is that we...
how is that guy we watched the in video in RE found 'inner peace' sat under a tree and made a promise to himself that he was not moving until he experienced it, before suddenly remembering all his passed lives. So what if I promise myself that I'm not leaving till I remember how that sentence was going to end? Well I tried something similar before were I promised myself I wasn't leaving a certain spot until I remembered something and it never worked, instead I just got more and more frustrated and missed out on dinner. If I stayed here all night, I could just make a mug of myself again and not get any sleep. I still can't say I'm not tempted to try it again though because, if I don't remember the end of this sentence, it will another thing to annoy me for the rest of my life and I don't think I can't any more frustration up on years of frustration building up inside.
I swear Berthy, sometimes I wonder whether I have any more than half the mental capacity that I used to...
Hey darling. I was hoping you'd pop up at some point.
I'm genuinely sorry I made you feel that way but you know I don't care, all I care about is that you're not alone. I could NEVER let that happen.
But, it's almost like karma has launched it all back at me any way. I've left Lincoln uni because I couldn't manage with the girls I was living with. After a number of weeks they turned round and basically attempted to kick me out. They obviously couldn't because we'd all signed a tenancy agreement together. I'm still paying rent for down there and I've not spoken to one of them since the whole ordeal. I thought I'd made one of the best friends I could have done, not one person from where has spoken to me since I left. Other than one informing me of rumours still being spread about me.
I was too weak. And I came home, transferred back to college with the hope I'd be fine again. And it's all happened it a bit of a whirlwind..I've lost both of my best friends, one wants me dead and the other simply won't acknowledge my existence. I've literally been left with nothing but monshe problems and agony.
You have no idea how grateful I am you've found a true friend. You deserve the best, gorgeous. It's better to have few really good friends than a large group that mean nothing, which is what I unknowingly ended up with.
No unfortunately it's now my constant state of health. There's no changes. I only notice the bad these days. I've been referred back to rheumatology so I'm hoping something will improve on that front...how are you really doing bubba? What's going on in your life?
That life sentence thing: YES! That's EXACTLY how I feel...like you're on death row or something..we'll do this. Together we can win this entire war.
Oh sweetheart don't be worrying about that.
I've missed your rambling, it's almost comforting, familiar and homely...sounds stupid I know but hey, what're you gonna do?
I've missed you little one, keep smiling and stay strong. Email me some time, I'd love it if you did again. OR...If you've got a smartphone..kik or whatsapp, darling? Just ask if you want any info on any of them.
You've really no idea how amazing you are. And no! Please don't apologise. I was happy for you, I just didn't know quite how to respond because of the timing, and you seemed to be coping so well with your Fibro that I thought I was going crazy, not being able to cope with it like you. (I know, I know *holds hands up* - what am I like?) All I wanted was to be able to be dealing with it like you were.
I'm so sorry - about all of that. I really thought things had turned around for you honey. Now, thick question coming up. Was it really just because of those girls? It seems a lot to be giving up what you love doing just because of roommates, was there no way you could talk to the uni and asked to be moved? Is there still time? Or is a mixture of other things as well like Fibro? As for the friends back home... I don't know where to start. Just that I know what it's like to be betrayed by someone you trust and neglected by them for no reason, and it's indescribable - the impact is huge. I know it's easy for me to say but they're not even worth giving a second thought.
We will fight this war, I know it's so easy for me to say but everything is going to be ok. I don't know when, and sometimes it has to get worse before it gets better and maybe that will involve effort and fighting on our part (and maybe it will feel like there's no point but there is, every little helps) but it will be, simply because it has to be. We must keep telling ourselves that. And you're right in what you say, one friend is better than a million if they're not your true friends. I think me and this friend are lucky to have found each other and I'm ever so thankful, I know whatever else happens regarding uni that I will have come out of it making one very good friend and making the difference to someone else's life.
And now to answer your question, there's the one friend at uni (I'm still there and we'll gete to that in a minute) and I find it hard to interact with anyone else at times because the Fibro is affecting it so significantly - the confusion, slow reactions times, sometimes feeling unable to speak because I am so tired, and wanting to be on my own. But I don't really need anyone else. I've got the friend at uni, another doing her course in France who comes home in the holidays, and one who's engaged and asked me to be her maid of honour, who I've known since school. Obviously there are people online, like yourself, I consider to be friends as well. It would be nice if my parents understood a bit more, as all they do sometimes is tell me to look for more friends and make more of an effort. I think they were surprised at how little I'd changed since going to uni, I think they expected it to transform me or something, still expecting it to, when it didn't, that obviously confronted them with the realities of Fibro but they can't accept it, it's too much for them and I understand that now - so I try not to talk to them about it. Surprisingly I'm still at the uni and nearing the end of the first year, however, at times it's been a real living hell and some of the unpleasant memories will stay with me, sometimes I look back and still shudder at them and I'm not looking forward to coming back after Easter, in just under a week. As soon as I arrive in my room, all I want to do is go back home again. I do, have problems where I live. I can't sleep there and it has a snowball affect on my symptoms. You never know when someone is going to set the fire alarm off, and the internet and phone signal are s***, there have been some awful times where I haven't been able to contact home it's been so bad (I used to blame it on my phone but now I've made the connection). Symptom wise, apart from the tiredness and fog - I'm in constant pain in the back of my head and neck, and all round my jaw and throat - although it varies getting better and worse. It's become a part of me - I can't even imagine or recall what it's like to feel healthy again. My periods are a killer, one time it was so bad I contemplated calling an ambulance. And I've had what feels like a cold since September. Only sometimes it comes out. For example, I can't always cry because the congestion blocks my nose and stops me breathing. Oh yeah and locked jaw meaning I can't yawn and keep spilling my food. Other than that though I'm dandy. But I should be grateful I'm not worse than I am because I still just about walk about. Looking back at how my year has gone I know I'm going to have to seriously consider whether I can carry on after these next boat of exams, not least because of my symptoms and the mental and emotional distress juggling it all puts on me but also because I'm only just scraping a pass as my written work isn't meeting the standards. (I started writing a blog about it just last night, and will probably get it posted today or tomorrow.) I've had a brief chat with my disability advisor at the uni about my options for next year and she said I don't have to make a decision yet. However, like your situation I know leaving uni won't stop all the stress because we've got a lot of changes going on at home too - not least because my parents don't understand this condition, they abhor the idea of me leaving uni and will not welcome me back in open arms, there's also the small issue of moving house - we're taking my grandpa in and finding somewhere bigger together. In the meantime he is going to sleep in my room - as he's 83 I'd have it no other way. So it would take some adjusting but I'm sure I could find sanctuary in the smaller room I'll stay in the meantime. My grandpa - who's visiting for Easter at the moment - also openly expressed his appreciation of what I was doing which helped. It's the adjusting again to moving house which makes me so uncomfortable. All I care about is having somewhere safe, warm, and peaceful to stay in but it feels like the carpet is about to be dragged out from under my feet and I don't know how much more I can take - emotionally and how my symptoms can cope with it. It also means sorting through our old stuff which I hate. Mum and dad have already caused upheaval with my possessions and it makes me feel physically sick just thinking about it - my room was decorated when I was at uni, so it looks different. I want my old life back. Just clearing out my old school books the other day brought my to tears. I had a good group of friends at school, remembering telling you before - they were nice people but we all agreed, without saying out loud, not to prolong the agony by staying in touch because we're all doing different things, and we would have drifted (so better to leave on good terms) but I'm sure if things had been different I'd have stayed friends with them and will always remember them fondly. I've had so much emotional upheaval over the past 18 months I will never the same. It feels like there's some stuff I'm not going to be able to get over, but I've surprised myself with surviving nevertheless. Grandpa also isn't aware, or has forgotten, about the Fibro so that might be a thing we need to bring up because I won't be able to hide it from him.
So that's it I think. I've had a good day today, went into the town centre with my grandpa - just me and him.
You're right, I shouldn't waste what's left of my mental capacity on things I can't grasp. It just really upsets me. But I think you know that already. I appreciate your kind words about my 'rambling', although I hope my words hold meaning and you can perceive what I'm saying the way it was intend. It's something I endeavour to do and have great trouble doing at times.
Will email again later, just wanted to give you the heads up that I got your response. I know this is a bit disorganised and there are things missing but it's the best I can do. :/ I'm downstairs and everyone's making a noise.
How on earth am I amazing?? :') don't worry, it's fine sweetheart. Honestly
I wasn't happy at the uni either, it was mainly the girls but I'd been questioning my staying at the university roo. They just pushed me over the edge that last bit. What I think I'm finding it more difficult to deal with is the fact my mother is essentially condemning a lot of the things I'm saying or thinking about the one that isn't acknowledging me and it's making my question my own being almost, and I'm not sure if you remember but my mother and I are exceptionally close and it's kinda heart wrenching. I know she means well though. I know she's just trying to make sure I don't lose that friend entirely...if that makes sense?
You have no idea how how happy I am that you've got someone. And I extend my congratulations to your engaged friend and I'm really happy you've been asked to be her maid of honour I still find is exceptionally difficult to comprehend the way your parents respond to your fibro. It genuinely makes me angry, and I know it's wrong of me but grr. Thank god someone else has an issue with WiFi and fire alarms! It was absolutely ridiculous in Lincoln. And we were on the main student street and there was constant drugs raids or fights etc and it was just, so stupid. I fortunately have the implant so I don't get periods any more. They were never bad initially but still. Ah...yeah that's one thing I've always got...my mum and dad would never remove me from the house I guess. They're good in that respect. It might be worth bringing up with him, are you close enough to talk to him on your own? It might be easier...
I do sweetheart, don't worry. I always do
It's okay honestly, just take your time. I'm not going anywhere. Keep smiling, love and hugs.
Hi, I know exactly where you are coming from about doctor's. I had the same problem they wouldn't even see me for weeks when I was at my worst.
Eventually a family member phoned up rather brashily told them exactly how I was and never took no for an answer. When I got to speak to them they explained they just had no idea I was that bad or how to treat me. Hope you can think of someone like that to phone up for you? Hope things are better for you x
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after sitting up last night with my aches being the worst they have been I can sympathise with you. Difference being I only wish I was 19 again (being a good bit older) 
that in my case he must really hate me because he seems to be sending me just one thing after another! She just smiled and said that obviously I was loved and he knew I could handle it!! Sorry, that won't make you feel better I didn't either but it made me laugh that my daughter was trying her best to make me realise that I was stronger than I knew and would get through the bad days 
But I should be grateful I'm not worse than I am because I still just about walk about. Looking back at how my year has gone I know I'm going to have to seriously consider whether I can carry on after these next boat of exams, not least because of my symptoms and the mental and emotional distress juggling it all puts on me but also because I'm only just scraping a pass as my written work isn't meeting the standards. (I started writing a blog about it just last night, and will probably get it posted today or tomorrow.) I've had a brief chat with my disability advisor at the uni about my options for next year and she said I don't have to make a decision yet. However, like your situation I know leaving uni won't stop all the stress because we've got a lot of changes going on at home too - not least because my parents don't understand this condition, they abhor the idea of me leaving uni and will not welcome me back in open arms, there's also the small issue of moving house - we're taking my grandpa in and finding somewhere bigger together. In the meantime he is going to sleep in my room - as he's 83 I'd have it no other way. So it would take some adjusting but I'm sure I could find sanctuary in the smaller room I'll stay in the meantime. My grandpa - who's visiting for Easter at the moment - also openly expressed his appreciation of what I was doing which helped. It's the adjusting again to moving house which makes me so uncomfortable. All I care about is having somewhere safe, warm, and peaceful to stay in but it feels like the carpet is about to be dragged out from under my feet and I don't know how much more I can take - emotionally and how my symptoms can cope with it. It also means sorting through our old stuff which I hate. Mum and dad have already caused upheaval with my possessions and it makes me feel physically sick just thinking about it - my room was decorated when I was at uni, so it looks different. I want my old life back. Just clearing out my old school books the other day brought my to tears. I had a good group of friends at school, remembering telling you before - they were nice people but we all agreed, without saying out loud, not to prolong the agony by staying in touch because we're all doing different things, and we would have drifted (so better to leave on good terms) but I'm sure if things had been different I'd have stayed friends with them and will always remember them fondly. I've had so much emotional upheaval over the past 18 months I will never the same. It feels like there's some stuff I'm not going to be able to get over, but I've surprised myself with surviving nevertheless. Grandpa also isn't aware, or has forgotten, about the Fibro so that might be a thing we need to bring up because I won't be able to hide it from him.
Thinking about friendship ....
I've forgotten who I am
Please read and share,sorry if inappropriate, this man has been on hunger strike for 22 days over unfair treatment at the hands of ATOS
I'm having a virtual party all welcome!
RANT TIME SORRY EVERYONE
