This is all really new to me, I only saw this site today and realised that it may be good to join and see what others experiences are with having fibro. So far its helped lots and thats only from having a little nose around, its soo good that there are things out here like this to support each other if only I had of known before hand!
I'm only 18 and was diagnosed with fibro about 4 months ago, I still dont quite understand the whole condition and get so muddled by it all! I've been put on lots of different medication which was such a shock to me at first and now it almost feels like such a chore to take all these tablets to just have not so much pain, I get so worked up that theres so many other young adults my age that dont have to take around 11-15 tablets a day to get out of bed in the morning to not be in tears half way through the day because your in so much pain.
It's all so new and I just dont understand it, I was refered to the physio department to go and see someone there to help, I was told it would be a lenglthy process as I need to build my muscles up as I also have Hypermobility which basically means I fall over all the time break/discolate joints, im an accident prone basically! So I saw someone at physio which explained alot to me about Fibro and how we would work through different exercises to help with the Fibro and Hypermobility, I was happy enough to work though the pain and try all of these exercises, I only had 2 physio sessions with the physio before he explained that he was going to be rotating and having to work on the wards, so I would have a different physio, he said he would write up the plans of the sessions as everyone treats Fibro in different ways and he wanted to continute the way he had been treating it for me.
Yesterday I went back to the hospital for physio with the new lady for the first time, never met her before. Her first words were, you came to us with pain in your ribs, what did (other physio) say the reason for that was? I explained I had Fibro and that was a shock to her, I wasnt best impressed considering it would say on my notes that she had infront of her I had Fibro. I explained I had been suffering with recent back pain and she gave me some exercises for that, towards the end of the session she said thats hes happy to discarge me as she feels I dont need the service anymore. I was extremely shocked with this as it was only my 3rd physio session and being told it would be a long process now im being told im being discarged.
Maybe I'm seeing it from the wrong side or something, but it just annoyed me a fair bit. I wondered if any of you had had any of the same type of experiences with physiotherapy or other healthcare professionals, and if so how did you treat it?
Thanks, and sorry for going on a fair bit!
Charlotte xx
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CharlotteMck
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Hi Charlotte and welcome to the forum there are always people about and there's loads of information available.... Sorry you had to join us but always nice to see a new face.... My experience of physio unfortunately has been like yours.. My GP tried recently to get me re referred and the physios refused to touch me !!!!! Saying they don't do necks.....
Hopefully someone will come along soon with some more positive answers for you
I had physio and hydrotherapy for about 10 sesions altogether. The hydro was lovely but the physio (although a lovelylady) was all a bit pointless as the stuff she got me to do I found out myself just looking on this and other websites.
I was diagnosed almost a year ago and like you still wander sometimes what it is all about.
As you gets to grips with it all you may even find you dont's need all the meds and find others that work better for you.
I am so sorry you are so young and stuck with this burden, but as long as you ask for help when you need it and look to those on this site for support you will cope.
I can't add much to what my friends here have said - we've all had different experiences, some good some bad - but we share notes and make the best of things.
So sorry to read you are going through all this whilst still so young. I was only diagnosed last year, but had years of fun before this hit me.
Your medical care sounds very much like mine. They promise you the earth, and then when you finally get an appointment which raises your hopes a little, they discharge you without doing much. I would advise you go back to your GP and explain what happened. Ask if you can be referred back to the first physio again and if not, tell your GP you want a second opinion, and ask to be referred to a different hospital / physiotherapist.
You will find lots of help and advice here on the forum, and someone somewhere will usually have an answer to your question
Hello Charlotte! Welcome! I'm fairly new here too, but I've been made to feel so welcome that I can honestly say it's given me such an emotional boost I don't feel quite so isolated anymore. This forum is full of help, humour and support. It's a wonderful way to bear this dreadful condition we all unfortunately share. Not one of us has the exact same symptoms or have to take the exact same meds, but we all have to live with our own version of fibromyalgia. That means we all have total empathy and understanding. We can be ourselves without explanation or guilt. Enjoy being yourself on here and try and take something from it to help yourself. Just a word of warning, there are some wonderfully mad bloggers on here and you will get dragged into a few 'barking' sketches if VG( chief script co-ordinator) has anything to do with it. But enjoy the energy of the madness and don't forget that humour really is a medicine and chuckling a tonic!! Welcome and happy chuckling, S x
Hi ive just read this an just wonted to say ive bean honestly told by my phisio today she doesent know enuf abot my condition to treat me an take the risk of making me worse or hurting me ,shes asked her coliges an no one has bean traned in this so ive got all my keep flexabul excercises to keep doing then , an to try an find somewear that have bean trained to
Treat me . An im to consentrate on Hidro & anything connected with pain relief She was lovely an very honest but ?? Im woundering it that y she has discharged u because she hasent bean traned fir this condishin , not your fullt !! Ask to c another phisio your only young an need to get as much hellp as posable so u can get the most a out of life with your condishon , good look & to smile it realises happy endifines xx kugergirl xx
That's not the best thing to be told by your physio,
I do feel for you as I know how you feel kind of!
I think it's so good that she told you that because,
I think if that's what I was told yesterday then I would have coped with it better.
The way I see it at the moment is though Ive been plamed off again and off to another person! I did think about asking to see someone else I just feel a bit bad, I might get my mum to do it for me!!
No chick but its honest an rather that. Ye good idear to get your mom in on it we come in handy sometimes my daughter is 18 -19 an has Hypermobility grade 10 she said its poo think that somes it up , we call her little mis sunshine cus she never stops smiling . Hope u can keep smiling an get somthing sorted soon xx kugagirl xx
I am new here and new to Fibro too. This forum has helped me lots as only my hubby knows about it at the moment, so this is the place I come to vent, find out info, sometimes just to see what is happening with others and sometimes even share a joke. Before I found this forum I really did feel alone, especially as I am still trying to get my head around it all. As I said recently, just when I think I have things sussed something else happens to surprise me - I find it difficult keeping up with my fibro self.
On the physio subject, my physio is lovely (and gorgeous - gotta have some perks eh?). The time before last I was in a lot of pain with my neck (I am currently sat propped up in bed with a hot water bottle) and he did traction on it which helped a lot. The last time I went I didn't have pain pain, just v. bad muscle aches. He said there wasn't much point doing anything that day as there wasn't significant pain in a place we could pin point (though of course the muscle aches all over are intense enough on their own). However, he didn't discharge me. He listened, talked more about pacing and referred me to OT to help with the pacing. He is seeing me again in a couple of weeks just after I see the OT team. He too said to me it would be a long process and seems to understand the fluctuating nature of this illness - oh, how I need him right now for my neck! Whether it will help in the long run I don't know but I am willing to give anything a go (obviously nothing to do with him being gorge!) I would call and ask to speak to the original physio to see what he says or go back to your GP - you deserve to get the right treatment.
I try to stay positive and strong, that this isn't going to beat me. But I do have bad days, today is one - well I say today but the past three weeks have been bad, today is just badder (is that even a word?). On these days I feel overwhelmed and really can't see a future with fibro. That's why I am here now, because I know someone will have posted something that will keep me going, or they will reply to me with a positive thought and fibro e-hugs. And I will live to fight another day.
So here are some (((((((((hugs)))))))))) for you in the hope it works for you in the same way.
You are the cutest thank you soooo much for all of the kind words and support its fantastic, this is just a fabulous place where we can all share experiences about something which not many others understand but yet we all understand each other so well and are able to help each other when they need it.
It sounds soooo familiar my old physio was quite nice looking also!! It helped with thinking urghhh more physio! I think I may get my mum to go and speak to them as she works at the hospital also, I just feel like I'm at a wits end with it all since the beginning of all of this I've been passed from person to person like I'm some sort of burden and no-one ever can answer my question or help me or tell me what's wrong! I'm just getting frustrated by it all but hey ho what can we do!
The hot water bottle works for me tooooo, it's the best thing so far with the way my back has been. Like you today has been the worst day I think I've ever had for pain, I've taken all the possible tablets I could have I've hardly done anything I.e been in bed watching telly or on the sofa but yet I've still been reduced to tears by the pain and I just feel no one can help me, I'd hate for this to be the same for ever I think the uncertainty of what the future will be like or how different my fibro could be makes me worse I fret too much!!
Thank you soooo much for replying to my blog you've helped an awful lot, take care and look after yourself!
I'm sorry you're in so much pain - I wouldn't wish this nasty condition on anyone. To have hypermobility on top of that must make things harder too. If you have any queries about symptoms you are welcome to come to me. Personally, I feel I have worked out what helps them and what doesn't. The unfortunate thing about Fibro - it seems to have every symptom under the sun - well most of them anyway, but this doesn't mean you will get all of them all of the time.
This is forum is brilliant as you have probably noticed. And there will always be people to answer questions, give advice or simply offer support and compassion. I've glad you've enjoyed having 'nosey' at the site before joining - I was exactly the same. It was the best thing I ever did.
I'm sorry you've been struck with this so young. Maybe I'm clutching at straws but I will never stop hoping they might find a cure. They are ways of managing, you just have to find what works for you. Remember, you've all your life ahead of you and you know never know what's around the corner.
Bit better today. Far less foggy. Sometimes it takes about 3 comments before I get it right. It doesn't help being a perfectionist either.
Take care & best wishes
wanderingwallflower xx
P.S. I also know what it's like to deal with Fibromyalgia age 18 - because that is what I am. It's pretty lonely sometimes. You're NEVER alone though, remember that.
Thank-you soooooo much, your so kind and everything you have said really helps and makes the world of difference I'm so sorry that your only young also and have this to deal with!
Your most welcome I'm glad what I've said helps and you've already found comfort and joy from the site. If you have any other questions about this condition and what aggrevates it - I'm more than happy to help.
Emotion is a big, big part of it believe, I've had a hard time recently and became really clouded by fog and poor concentration - but feel I have made significant progress since talking to the councellor - already have less symptoms than a few weeks ago and the fog have almost cleared (Even if I do worry still) Most of the time if I am a positive person and that helps - even just emotionally.
Thank you for your kind words also if you ever feel like chatting I'm more than happy to talk
...*Tries to remember what was going to say* Glad you have found the site helpful we're always here if you ever need to vent your frustrations/just need a bit of comfort - I do it all the time and it's really soothing I have to say.
I just wanted to say that I'm sorry you're having trouble getting people to understand what it's like living with Fibro and getting support in managing the condition - eventually people WILL start to get to know you and your needs but it might take a while due to the nature of the illness. There are a few other 18 year olds other than us on this forum who know pretty much exactly how you feel and are in pain only too often - it's distressing to see. The 2 I've spoken to haven't been online so much recently, because I think they need to take breaks from the computer every now and then to keep their symptoms at bay I imagine
I really wish there was something to make the pain go away - there are ways to alleviate it, but it's just trial and error basically. I really think the natural way is a good starting point. Recently I've been in to meditation type music which really calms me down if my Nervous System is over working itself. You could maybe try listening to '528 Hz'? I haven't listened to it all the way through but I've heard it really helps - apparently it's the purest sound of the Earth - meant to have healing elements. I've found all kinds of weird meditation music as I soon as I'm certain about it's benefits I am looking forward to sharing it with the forum.
I'm just trying to think of how I would help someone who's new to all this: as I believe there are different stages. But perhaps we experiance them differently, as when I was first diagnosed (aged 16 and half, December 2010) I quite happy - sort of, I had mixed feelings as I know it's not something to celebrate, never getting better. And I think it's only recently I've had to learn to accept that it's there for the long haul (unless we have a miracle - and you know I never stop believing in miracles ) as I think when I was first diagnosed I was quite niave at what it meant.
One of the things you might find is that you might experiance changes to your social/friendship circle - this can be painful at first, saying good bye to SOME people (not all) you knew pre-Fibro - but it means you're happier at the end and you know who your true friends are. The ones there when you're at you're lowest.
But anyway, the reason I was happy, was because I was having all these symptoms for months and months and No One believed me! Even my friend said it was in my head! For me, it was at that point I started having less in common with them. People's experiances of Fibro and their diagnoses are often 2 different things. Some people are diagnosed after a few months and suddenly become overwhelmed by the idea of having a condition like this one. But some people have Fibro for years before they get the diagnosis they crave. This is why I felt relief, as soon as the doctor said 'Fibromyalgia' the people I told soon changed their tune - and it was a huge relief for me - finally getting some acknowledgement. I think for me, I had gone to terms with the fact that my symptoms were long term - which is why I dealt with the diagnosis the way I did. Now my symptoms had a name, and treatment options, I could ask myself 'ok, so I have.. Fibromyalgia. With support, what can I do to make it better' from then I was able to get to know my body and manage the symptoms in the best way I could. It was quite an experience! Anyway, that's me waffling. I guess what I'm saying is the time when the diagnosis occurs can make experiences different for everyone. And soon enough you will 'get to know' your Fibro - and to an extent make peace with it. It's like confrounting a bully maybe - you have to find it's weaknesses.
I will stop waffling but I hope this helps. If you ever feel like chatting about anything other than Fibro then I'm more than happy to do that I am a cheery person and I love meeting and getting to know people. Also, I think we have to take our minds of Fibro to remember that we're still us. Not just a label. As I think we can sometimes lose ourselves in our symptoms become clouded by negativity and what our illness means to us. Is it in my imagine or did you say somewhere you worked with kids? I'm maybe considering this as an option for my future so it would interesting to chat about. (I could be imagining things - apologies if this is the case)
We are generally a happy community despite the problems we may have. Yes, there will be times when we moan - when it is the Fibro but there well also be times when we make jokes, shared different experiences about our lives - post and pre Fibro. Very-Grumpy ('VG') and Co. are practically - I always have a skim of their stories/role play and it really cheers me up. You get to know the style. We also have a 'Jokes Galore' page, where people can post their ideas and generally have a laugh and I think we have a recipe corner.
I hope the above has helped, so that you have better understanding and can maybe chill out and take your mind of things for a while - relaxation is very important. Feel free to post a question in the 'Questions' section if you need anything - this forum is more than just for releasing frustration - it's there to give you access to practical help and advice, with a great bunch of people who know their stuff; and can give you advice if you feel you have been treated inadequately from a health professional. They usually respond quickly if you need any advice for anything.
Ok, I'll stop rambling now as this is probably a lot to take in especially with regards to fog etc. (Lots of our members will tell you that I am rambler )
Oh my goodness your like the best/cutest a ever!! Thank you soooooo much for everything you've said it's brilliant it really is. Your fantastic I see where your coming from in all of the different things which you wrote about above. When I was diagnosed I'd only been poorly for about months I'd been told it was just a chest infection because I was in constant pain in my ribs, then got told it was plureisy then months later i was told it was pneumonia so it meant I had more time off work more chest X-rays more bloods more tablets! Then because my bloods were funny they said I may have a blood clot in my lung and got told I'd have to have scans and this that and the other but then changed their mind about it. Then sent me to a rehumatoidologist 4 months later and I was told it was fibro, I'd never heard of it in my life it was almost a you've got fibromyalgia and that's it next patent goodbye! They didn't even have a leaflet at the hospital about what it was I had to find everything out myself! I didn't want to be told I'd got fibro so i think that's why I'm struggling because I don't want to believe it, I just want to wake up and be a normal 18 year old, that can go out for a drink with her friends one evening, can go shopping without having to stop every 15 minutes, go to work and manage a day without crying because of pain! I just feel like I've been delt the shit card and that I've had enough go on already I don't need this as well!!
Sorry for my moan I really am!
I shall take in all the advice you have given me thank you so much it really is so helpfull. At the moment I just see it as tablets tablets tablets and more tablets!! I'm just falling apart I've decided!! My little cousins tell me I won't make my 19th birthday the way I'm going! Hahahah!
Yeeeeep I do work with children in a nursery which is lovely I get to work in all of the rooms as I'm relief staff which I love seeing the baby babies, toddlers and pre-schoolers! It's nice I struggle a bit with pain and beig able to do things, can't sit down for too long otherwise I get stuck!! Work aren't the most supporting with having fibro because they don't understand it but hey ho I hardly understand it myself! What are you up to? Sixth form still or uni, or work?
Thanks again it's so kind of you and really means alot xxxxx
Thanks for replying so quickly! I really enjoyed reading your response and am happy to know that I have made a difference to your day.
I had a LOT to say in response it was ridiculous but as I am typing it out, I am getting increasingly tired. So I have copied and pasted and the start and will finish the full reply as soon as.
Don't worry at all lovely! You take care and reply whenever you can only if you want to obvisouly!! Take care
Xxxxx
Hello and welcome to our lovely forum Charlotte, you are most welcome here!
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Hi again - well I said I'd make that full reply. *Hold breath* Here goes:
Aw bless you! I'm glad what I said before helps. I know how isolating it can be to be living with this thing so young and wanted to give you as a warm a welcome as I could. It sounds like you've been through a real tough few months and I'm really sorry to hear that - there can be doctors out there who are very unhelpful and fail to show any emotional support, (I'm guessing because they don't regard it as their job - even though they should without being asked I think) you often come across people who feel like they've been treated inadequately and you tend to come across a lot of complaints on here so you're not alone in that area either.
There are really good health professionals out there who WILL give you there time and be able to treat you well - again it's just a case of looking I'm afraid. It can imagine it must be really over whelming having lived through a series of possible illnesses/diagnoses only to find the idea of having an condition such as Fibro at the end of it. It must of been a stressful ordeal and possibly caused your symptoms to worsen - as stress does. The proirity thing you need now is time. Time to recover from the stresses of the past few months, time to come to terms with what's happened here. So you can figure out how to deal with your situation. I believe emotion plays a big part in these things. I have been getting help from the counsellor and have since noticed a significant decrease in my symptoms (I am still struggle - but for different reasons) and any kind of grief can cause this. It may be possible that you're actually going through a 'flare up' (a sharp increase in what would be your 'normal' symptoms) as a diagnosis of Fibro can play havoc with emotions - and yet strong emotions can play havoc with Fibro - a vicious cycle. If that's the case, you can expect that your symptoms will dampen down.
I understand pretty much everything you say - although this was before getting diagnosed I still had long come to the conclusion that the symptoms I was getting would be staying with me for a good while, and I can only remember seeing - at the time - other 16 year olds: Going to parties, celebrating the end of school and their GCSE's - having a wonderful summer. Their lives stretched out in front of them. While I would be watching through something like a glass wall - trying to get out and be a part of them - be a part of the drama.
I would go to bed each night - hoping for a miracle, hoping this was just a bad dream, hoping everything would be back to normal when I woke up the next morning. Almost as if it were a bad dream. I tried everything. Wishing it. Saying it a loud. Prayer. Nothing worked and one day turned in the next. Nothing changed until the diagnosis and I lived in this sort of state for 9 months - which is good in some ways as some people wait for years. After the summer had ended I was passive doing exactly what my parents asked of me and exactly what I didn't want to do: I stayed in the same school I'd been trying to get out of for 5 years - and attended sixth form there - doing the Creative and Media Diploma - which was great, but I couldn't exactly participate in the activites such as dance and improvisation (teachers thought it was laziness I think). So I missed lots of it. My parents and teachers were fuming - saying I had a bad attitude and I had brought the symptoms on myself - they believed I was imagining it. It didn't helped that despite numerous blood tests all came back clear. They told me just to phone the sixthform and leave, as I was wasting all my teacher's time there. My GCSE's were affected and therefore my options for the future. This is why I stayed an extra year at sixth form (more about that in a min) to prove my teachers that I deserved to be on the courses I wanted to be on. And in some ways start again. So I can, even though the timing is different, understand that feeling of isolation, of not being able to accept it as I've been there. And I understand to an extent the issues at work because I had them at school. It's still a problem for me - my Head of Sixthform didn't know I had Fibro until recently when we were going through the Uni application process - it was only then I could explain why I'd been so distant when I first joined. (Although that's water under the bridge anyway - she's proud of me generally). My advice is, if you need extra support at work - come armed with Information, a doctors note maybe, and a leaflet of your Fibro and it's symptoms I was giving mine but you get access from the internet, I will see if I can find the link for you to print off:
I am 99% sure she gave me this exact leaflet. The same one my parents read which gave them some understanding after I had been diagnosed. If you choose to read it also, please don't take everything it says face value - as you will not necessarily get the symptoms - it's just a generic outline of Fibro - but the main principle is everyone is different and experiences of Fibro vary. You may also benefit from the Spoon Analogy, an approach which attempt to explain - in the simplest way possible, the difference between 'healthy' people, and the difference between 'sick' people. It may be worth showing it to your employer and they may be able to provide some extra support for you.
It's quite an emotional story, but it's so insightful. You will probably come across many people talking about 'spoons' on this site as they have before - I know I do - so it's better that you're aware. Please don't worry about the 'moan' we all need it. It's perfectly natural to feel the way you do - especially at 18. I'm wondering whether you still need to get some bits and peices double checked, because lots of symptoms can mimic that of Fibro and it sounds like the medical professionals you have been involved with have some across a lot of possible medical conditions and have been a little incompetant maybe. I think you need to see another doctor and get some things ruled out - just in case. I know that's harder than sounds. Once you've been reassured nothing else at all is going on it might be easier to come to terms with the Fibro. I know you're having difficulties understanding it and the recent stresses may be causing you uncertainty.
Sometimes I just wish I could wave a magic wand and make the pain go away. Have you tried going on a Pain Management Course? It's sounds like your in pain a lot and it's causing you stress. It does get easier - that I can say. I'm not saying it will be a straight forward process, but symptoms can improve with effective treatment and various changes in life style. The sad truth about Fibro is that a lot of women who have the condition have been through years of stress, so it's clear that one of the biggest theories here is that stress - and this may go for the stress you've been through - may have caused the Fibro. Fibro is sometimes said to be a way of your body telling you: Enough. It's a cruel, knock-on effect. And it seems to be affecting more people.
Currently I'm in the sixth form still - as I stayed a 3rd year (taking up 2 other subjects to replace the Creative and Media Diploma). I realy enjoy it. But it's tough having to get myself going in the mornings as all I want to do is sleep most of the time. I've watched my friend leave after 2 years and - strangely, my last year is like starting again, even though I'm so near the end now. It's crazy. I spent my first 2 years there living with Fibro in the school's ignorance. However, very slowly, they are becoming aware. I do 'people' subjects: psychology, sociology, and English Language, it's really interesting, albeit I need to be in right frame of mind to be able to concentrate and make the best of it. I have applied for Uni and want to take my study of Psychology. Possibly working with children afterwards. It sounds like a soothing and very rewarding job to be able to work with little ones. I'm glad you enjoy it so much. It's weird ya know, I used to think children didn't like me but since spending more time with younger cousins etc. they seem to like me and I am getting more confident.
I wish I could remember what else I was going to say as I had ideas going on in my head the night I was starting to write this. Now I can't think straight lol. You will find this happens a lot with me. Next time I will make a check list perhaps? And now I'm rambling. But if I think of anything else I was going to say I let you know.
Please, feel free to message me anytime. It's been really interesting getting to know you. And I like to think I'll be there through most of it - most of your Fibro journey and you for mine. And we can maybe help eachother out. Compare notes etc. I hope what I've said here has helped. If you need anything please give me a shout and I'll do my best. Hope we can keep chatting anyway.
I just want to add - hard as it may seem now. You will be amazed as your increased sense of strength and what you can deal with. I just want to say also, the bit up the spoon theory was what I'd written on the night I intended to make a reply. The rest was written last night and is a bit.. all over the place really. The joys of fog I suppose. Hope you find the Fibroaction page helpful. LibertyZ got there before me! Memories keep returning to me in bits. I'm sorry. If you have any questions about half of what I'm going on about feel free to ask. xx
Thank you for the email I really enjoyed reading it (especially the bit about the kids - they never cease to make you smile do they? My new cousin - well I say new but he's 4, was adopted by auntie - pretended to be a dog last time I saw him - expcted me to pet him. As my auntie says, he is like a mini 'Gok' - this one time he picked dandelions in the garden he wanted me to put them in my hair - he was so joyed when I did! :D)
I will have a read again tommorow and reply in full then.
Your more than welcome my lovely take as long as you want to reply I'm in no russssh
Hahha they are funny I had one of them tell me today shes got a horse in her house and a pink sparkly cat and her dads got a monkey!! Another one told me she had a horse in her garage but she as telling the truth her dads a jockey!! I was going 'noooooo you can't have a horse in the garage!!' Silly me
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Its such a shame isnt it, I just wish it was different! 
she said its poo think that somes it up , we call her little mis sunshine cus she never stops smiling . Hope u can keep smiling an get somthing sorted soon xx kugagirl xx
tribunal so worried now its getting closer
So much for the New Year!
A warm belated \"HAPPY NEW YEAR\"to all my fellow fibro mites
NOT SO GOOD MORNING :(
I havent gone yet so I thought i WOULD DROP A LINE to you all -- MORNING well
