I can FINALLY settle & tell you about my EVENTFUL week. Warning: it's pretty long. Funkyfairy repo
rting from her bedroom, with a pillow placed behind her back, as usual.
So I came onto this computer 2 nights ago with good intentions to finally (a) reassure you I'm still here/apologise for my absence, (b) express my appreciation (c) update on the week I've had - something like a Positive Fri blog, apart from with mixed feelings. By now you probably notice my usual pattern; where I'll write a number of negative of blogs - and then a number of positive blogs. The positive ideas are usually thanks to you. You - my Fibro family - are the most loving group of people I have ever met and your encouragement, positivity, wisdom and appreciation is what keeps me going, especially during tough times. You all know who you are. I had very good intentions to write a blog Last Friday, not just yesterday. But I was very tired after a long week, as I've said, I'm not right, but I'm staying strong - and one positive I'm not getting worse. One of the things I wanted you know about that, just the day after I wrote my last blog, I've finally got counselling - I met him last week. My journey starts here. And with other events of this week, progress has already been made. I am waving at my confidence, which is clearly in my sights - and it smiles back, running toward me...
Anyway, counselling was NOT what I was expecting it to be, (well, it was and it wasn't, I get you get these ideas in your head about what to expect). I opted for counselling with the intention of not getting too-worked-up, just talking carefully through my selected issues and seeing it if it would provide me with something extra. I wanted to talk about here and now.
I surprised myself by breaking down in front of the counsellor when talking about my Granddad - which.. dude! (I never say 'dude' do I? ) - was particularly frustrating because that's not the POINT I was trying to get to, it caught me off guard, this lapse conversation - and I couldn't remember my thread. (I also went with the intention of maintaining my composure - I hate crying in front of people - but I guess that's just not how it works is it? And during the stresses of sixth form, I guess I forgot just how grief I still had left work out and, sadly, the regret that came with it.) Luckily, I have many other sessions to go - hence many more opportunities to speak about what I need to, and this counsellor is really good, he seemed able to tell what I was getting at ('It seems to me like you've got more and more behind in your A-levels, you're in your last year, and you feel you're running out of time.' (owwt) Nail on the head.) It's as my support assistant said when I spoke to her later about how weird and tiring the whole experience was - counsellors listen to their clients so intently they know what you're trying to say, even if you can't get it across. (And - halleluiah - he has HEARD OF FIBROMYALGIA - which means I don't need to keep explaining myself!) That's all I'm going to say now, but it seems that counselling is going to a draw far deeper than I thought it was, the school nurse (who put me in touch with him) told me that it’s an apparently hard thing to do, but it's worth it in the end. And yeah. I guess I do feel better. Less ill this week (though not without fatigue)...
...But that may have something to do with my spa session on Monday. The only issue I had here was I probably would have enjoyed much more on a Friday, AFTER the exams. I don't think I have many people much kinder, or more soothing, face to face. She was fantastic. She gave me a facial too, and it cheered me up when she said she thought I had lovely skin, as my appearance & overall physical well-being has always been something that worries me. It boosted my self-esteem. She even gave me some advice on which products would be best for my skin. I occasionally still feel the effects of my Swedish (the deep tissue really was too deep for me) massage too. I really liked it there. Just the feeling. Like I was being taken care of. I wish I could go again. It's amazing the type of power music has too - in the background these soft, original beats were playing which made me go into my own little world. It made me think of outdoors, the night sky. The beauty of wildlife. The beauty of compassion between the humans.
It feels good to be taken care of. And it feels nice to be needed. My poor friend Rach. I have known her since Year 7 and up until 2 or 3 years ago we had had more childish fall outs than you can shake a stick at. But we stayed friends. Best friends really. Although there are times when I wonder if she's still got some way to go yet - in terms of development. She doesn't know about the Fibro - but that's not really a surprise. A handle of people in my area know. Anyway she is really struggling - living alone. And it's me she needs. So I saw her last weekend and we chilled out - and it was nice inviting her to mine for tea on Tues. We had spag bol.
I started the school week, however, in a fit of despair. At my age you just don't get that exhausted straight after the weekend and struggle to fathom how you will cope throughout the week - let alone one with 2 exam modules to get through. I felt like I had lost control because I didn't have paper and pencils, which I really needed (it's amazing how it's the little things that get you) and I couldn't find a printer to print out some English work - which I desperately needed to annotate (our home one was out of ink at the time). All of this on top of not feeling well? How much better organised was I going to get for the upcoming exams? Especially after a hard day. It's like a domino effect. A bad start to the week often carries through to the rest of it.
After countless attempts at printing in the sixth form IT room (which is absolutely swarmed with loud Year 12s - even if they don't take their own futures seriously it would be nice if they could think of other students who need somewhere to work) on a printer that refuses to operate (the same went for the school library) I rushed off to see my support assistant, and she let me use her printer. 'I feel like crying...' I (almost!) whispered, even though I didn't. And it's amazing how the soothing the simple act of having your arm patted/rubbed up and down is. 'I need paper' I said, later on 'We can get you paper' she said calmly. ‘Is there anything else you need? (a) a brand new ruler, still in it's plastic (b) pencils (c) paper, even (d) a new pencil sharpener, all within the space of a few minutes (Honestly, she is like Super Woman!), before I was able to settle down in a private space where, finally, I could produce a real piece of work to The Best of My Ability - something which I haven't been able to do for weeks (and that's not an exaggeration). It’s only a shame it was one the last 4 yet to be marked, that's about the only interesting (non) thing that happened on Weds. (That - and, making the whole class laugh in English - only I'm not sure whether it was in the right way. I think my new English is still going to take some getting used to) Oh – we did start watching a film in psychology. Anyway, the teachers seem to be well aware that I'm having real problems finding somewhere decent to work at the moment, and are doing all they can to find me my own private 'cubbie holes' to work in. I’ve already been given personal access to one room – and I've been told I can use the pastoral room (the one where I did my English work) when it didn't have 'naughty boys working in there' (I said to my SA it sounds like a pretty soft punishment, being placed in a quiet room to do work rather than a noisy classroom - she agreed - apparently the boys surprise themselves with the work they get done when free of distractions). Anyway I spent the rest of Monday working on a Uni form for my back up choice. It was medical and allowed me to ask for support e.g. specialist seating, a scribe in exams, an electronic note taker. ('Can I have a butler to come and bring me my food on a silver platter, please? ) It appears that this Uni provides a lot of facilities for people with specific needs, which is the first positive for this week. Speaking of which – saying the name ‘Fibromyalgia' is something my SA does with great difficulty. She must close her eyes and set her jaw straight as she invents crazy terms such as: 'Mirofrabalgia' 'Fibro.. nyalgria..?’ some of which have me almost wetting myself. And when we laugh together, basically ‘at’ the condition, it’s meaning seems to fade into almost nothing. Only a long, silly, fancy word that my SA can’t pronounce. It’s the beginning of Fibro having less of a hold on me, laughing makes the pain go away. It also feels like in my own, important way, I’m ‘hitting back’, at our illness. They say laughter is best the medicine – and how sweet medicine is when it’s at this expense. During our giggles I told her that I simply ‘had’ to put this in my blog, because the way something so simple has helped me, and my perception of this word, I’m hoping it will help you too.
Moving on, I presented said form to the Head of Sixthform and - suprise, suprise - 'what is... Fibro..(frowning at the sheet)
..my.. al..GI..A?' (SA: 'You say it better than me') So I WAS right, after all. Mixed feelings about this. On one hand, it makes me feel better about myself, the fact that the she (and my other teachers) are and have always been so incredibly proud of my throughout my 2 and half years a higher education student; it shows just how well I’ve been coping with these symptoms up until now, to the point of it being missed altogether. One the other hand... Just imagine: how much easier things would have been, if only ALL the teachers (excluding the support staff) knew the exact extent of what I had to cope with, it might have made things A LOT easier. Possibly no difference for the most part when things were ticking over nicely - but with the stresses of the past few months, which is what causes flare ups in the first place, they ought to have known the true affect it would have had on my health, and hence my academic performance. Would I been so behind? If my teachers were more aware of things during my bereavements. I know it would have made things marginally less awkward when presenting my form to her. I am VERY sensitive when it comes to explaining this condition to healthy people – you haven’t heard of it (which is basically, why I talk about it on here, to you guys, people who understand) and it isn’t easy to explain it to other people in simple words: what it is, what it means, and how it affects me. I tacked it in the best way I could, explaining it in terms of context; 'you remember at the beggining of sixth form, when I wasn't myself...' but it wasn't easy. I keep twitching and twisting my head in these directions - embaressed, worried about what her reaction would be. Her lips were pursed together, like she was trying to hold something back, and I couldn't distinguish whether the look on her face was that of concern of pity. But I'm going to guess concern. I said painfully obvious things 'when I flare up - they call them 'flare ups' by the way' (why did I say that?!). Basically I just felt myself rambling and explaining the symptoms in a disordered, incoherant way.
Luckily, she is very good. And she seemed to understand what I wanted to say. One positive thing: she knows NOW. She said the form was fine, but perhaps I ought to explain just how Fibro affects me - state the obvious. And mention the loss of my Grandparents, just so the University that sent it to me was completely aware of what was going on. (I did try to disclose more info on my UCAS form - however ran out of room after a number of attempts) so this is what we did, in our own private space, with my SA assistant (who giving me as much guideance as she is able to because she knows, as well as the issues regarding concentration, how anxious I am about getting ready for Uni) and a newbie to the support team - someone who happens to be my old Year 10 Biology teacher, and fortunately, still remembers me. I explained the issues verbatim to my assistant, who transfered it into a list - it was a pretty long one. She then had to go and handle a difficult student so it was up to me to write the issues in my own words, I basically expanded up on what she said. During the session, I found my glancing at the list of frankly unpleasant symptoms attentively, after a pause of silence - 'Seeing it written down like this...' I gulped '...makes me realise...' 'What you've got to cope with?' My assistance finishes for me, while I nod. With the assistance of the two supporting staff, we began to create small paragraphs of how each symptom affects me - and we're still not finished, as I've had exams to think about, but I'm sure it will be wrapped up tommorow. At the end of the session, my Biology teacher had something she wanted to say: 'Can I say just how impressed I am..?...' (remembering the little Year 10 girl I once was) 'You have moved me to tears' she was welling up and her eyes started to fill. 'Literally' she giggles 'Look' and I didn't know what to say. Sometimes I am completely stunned at the affect I have on other people, and that also made me realise what I had to cope with over the years. But this was barely the start, of a long, emotional week.
It was Thursday I had my Sociology exam - one I was really worried about. Though the boy who sits next to me in one of the lessons (I've mentioned it before) is laid back, friendly and 'keeps me sane' - I don't know how I would have coped on Monday afternoons and Wednesday mornings without him (thought I don't think he realises himself quite how much) 'See, you remembered Cloward and Ohlin without me even having to remind you' 'You know what? You're right, Kevin (his nickname) all is NOT lost' and that is what I kept telling myself throughout the week, despite the fact that revision ensured typing up the notes and filling in the gaps so it was at least semi preparation for a likely retake. I still don't know - but it wasn't a complete disaster, I managed to keep my pen on the paper right to the very end - which is a pretty good sign. I was fortunate with the first question, but not so fortunate with the second unfortunately. We shall have to wait and see. Going back to past experiences of Soc exams I have not been near finishing but still ended up with a good overall AS grade - which shows the information and analysis I do provide is strong. Sociology was something I had to work harder to mentally prepare myself for because that morning (my exam was in the afternoon) when I opened up my email to collect my typed up notes - at what was written on the screen - I found myself letting out a large, quivering exhale of surprise...
I had my Psychology exam on Wednesday which I'm afraid to say was a little disapointing. Which means I may have to carry on the Year to bump up my grade (If I get near full marks on the paper I've just done my overall grade goes up and I'll be able to drop the subject altogether, taking pressure away from me in the Summer), but I ran out of time. Trouble is - I don't want to redo the clinical/synoptic side again - as I remember enjoying it so much last year I don't want to create a strain from redoing it, which is what started happening with the current Unit I retook. I also don't know if I can do any better than what I already have done in those conditions which is why I'm wondering whether it's time now just to put it to bed - two years is a long time to be studying a subject in detail, especially when we keep going over stuff - but if my grade doesn't go up, then the retake would have been a waste of time. I guess I just need to put the exam behind me and wait and see my result in March. It's not good to speculate about things. On the plus side of Psychology it does include a really nice group of people, and there's always cake Friday. I am yet to contribute, but when I do I'm hoping it will be my mother's speciality - rum truffles. They are just the best. But then again I'm biased.
Friday I missed my counselling session because of the snow disruption, we were expected to arrive in school, but half the teachers weren't in and they let us go at 11:25 - because the weather was getting worse - although I stayed an extra hour to work on my medical form - when school isn't full of other pupils it's heavenly. I went to see my SA after my first (cancelled) lesson and she asked how everything was, to which I explained I was a little worried about my exams - however I do feel much better now they're over - like a weight has been lifted. At least now I can start again with new notes, I just need to make sure I inform people the second I start to lose control. But I don't know how I would have coped without you guys, let's see... it's like someone mentioned on my particularly negative blog from a few weeks ago, the fact that I have spoken out shows there's still Hope, and that's one my strongest values. Hope is something I cling on to because it's always there. (Like the butterfly that gets trapped in Pandora's Box...) And that, fundamentally, is what keeps me strong. Looking back at this crazy week eventful week, the tears, the laughter, the fear, the loneliness, the anger, the sadness, the laughter, the buzz, the new experiances - it's like looking up at The Rainbow. The Rainbow which comes after the storm and the sunshine, the ink of colours which presents itself only during the aftermath. The beautiful and diverse crystal clarity of a full picture. Chaos theorists believe you cannot have good without bad; the world would come to nothing otherwise. I believe the world is much more complicated than that. You can't have happiness unless it's coexists with many - possibly millions of other emotions, some which we are yet to find words for: love, friendship, compassion, fear, anger, rage, hatred, sadness, loneliness, excitement and joy, which all must coexist together. It's amazing to think that these feelings exist in less in an objective catagory, but run in to eachother. Frustration and anxiety. Fear and hate.. love. (Even the word love has different meanings.) They run across a whole spectrum of emotions - all linked together in some way -LIKE a rainbow. Sometimes they overlap and sometimes it's hard to distinguish between them. Not to mention that rainbows are beautiful.
There are so many people to thank (and apologise to) (sometimes I wonder whether put at the end of each blog something like - 'Discloser: Funkyfairy reads all your comments but regrets she can't answer them all individually' like they do for Dear Zelda ) scruffybabe, sandra, tulips123, LibertyZ, Pinkpig, Devonlady, Cat53, and her irisjoy to name the few who commented on my last blog. The rest of you, you know who you are. Not only do I have gratitude for your support, but your endless, encouragement, positivity, and giving me my confidence back. I'm getting there. But you know all know it doesn't just happen overnight and that there is 'No perfection with Fibro only progress' so give me time.
You may have notice from the ellipsis in a previous paragraph regarding my Soc exam that the story isn't finished. It's a snowy, Friday morning the support staffs' office when I go to see my assistant and I tell her about my last exams. 'I have some good news, though,' I say. By this point the other teachers are listening, and say 'We like good news, we wanna hear it too...'
It's when I go to collect my Sociology notes from my inbox that I make my discovery. I wasn't really aware of what I was looking at at first, just that I had more than just the email I expecting, but it wasn't a big deal, Universities always send their applicants emails thanking them for their application, or informing them of their Twitter or Facebook pages, changes to their site etc. Sometimes they even like to remind people of their Open Days so I when I found one regarding my first choice I didn't think much of it. My first choice was more of a wish, than a possible reality (although there must have been potential otherwise the teachers wouldn't have recommended me to apply for it), when I went to read the email, I thought I must have misinterpreted the first line of imagined it when it read 'we are very happy to have made you an offer', so this time, I read it again, more slowly 'we are very happy..' yes it's the same! And one more time. My first choice Uni. The place that coudn't be more suited to my needs and ambitions, the place I wanted more than anywhere but I was sure I had little hope of getting into. Had just made me an offer. They want me. And: they want to meet me. And cue the gasp, the first touches of emotion. The gasp didn't just come from the back that I was amazed my first choiced had seen something in me, which was amazing in itself, as this Uni couldn't be more right, set on the outskirts of a big city, but in a peaceful quiet location that's just 20 minutes away from my Granny and Aunt's house, and is generally fantastic - both for my subject and overall. It was the fact I didn't know if I would be getting ANY offers let alone my first choice: the one I reply I made when people told me which Uni I was going in for, to which the general reply for be, 'That's a pretty good place - good LUCK'. The following events is me just paraphrasing, I can't remember, verbatum. Head swimming, I go downstairs, hands shaking, I get my Mum's work number and dial. 'Mum...' I'm hyperventalating...I think they've given me an offer..' to which she gives a general reply of pleasure, but also responds gently. Currently my emotions were high as I still had an exam to attend to. 'I didn't think anyone would want me...' and that's when the water works hit properly. My Mum makes soothing noises 'Don't get upset' she says sympathetically. 'No..no, I'm not.. I'm.. I'm happy. It's just a surprise.' I say, wiping my cheeks. 'It's Excellent.' She says in her professional, telephone voice - I think she was trying to take control of the situation where I couldn't. 'I guess I just didn't know how much.. it's such a relief..' 'We'll talk about it this evening, you need to focus for your exam..' 'Oh Gosh.. I know, I know. Wait! Hang on.' I say, noticing something else, there's another email, this time for another Uni altogether. 'My third choice have...' 'I read, it says, 'Due to the strength of this application, we are pleased to invite you to an interview' they want to meet me, before they can make an offer. 'So they haven't said no?' 'No of course not.' And that was that. Until I hang up and set for my exam. Where I choose to keep the exciting news from any teachers I pass by, just until I have more information. Reality sets back in that evening, when I check the UCAS Tracker and notice the conditions remain high, but it's nothing I wasn't expecting. AND I find another offer has been placed, which would have been made just hours after I found out my first - the best part is. This time it's for my second choice, and the grades are much easier to reach so it puts me in a great position. My first and second choice given me offers, in that order. And don't forget the interview.
'I've been given two offers, I say to the group, which results in a standing ovation of applause, lots of hugging, questions of 'how did you keep it quiet yesturday?' and wide eyes of glee when I tell them the exact Universities that have made me the offers.
So I guess all the hard work I've put in these past two years has been worth it, and now I've been given this amazing opportunity. I guess I should conclude this blog then, with the idea that just because you have Fibromyalgia, doesn't mean there isn't a future ahead. My biggest ambition, above all, is to give people like us hope, and to change attitudes towards this condition, turning the tables to what we CAN do, rather than what we can't do. II plan take full control of this condition, and I plan and intend to do follow my aspirations. Maybe it won't always be easy I know with your support, and the help of friends, family and teachers, I can do this. This is just the beginning. (And do you know what the best thing is: even if I try and don't succeed - I can rest in peace tonight knowing that I've - inevitabely - touched the lives of people already. 'What Funkyfairy was she will always be' I can only thank you for giving me my confidence back.)
So, my fellow fibro family, other than the usual quirks of my blog, which to 'keep smiling'; enjoy my 'gentle hugs' and 'take care' - there's one thing I have left to say:
Watch This Space. (I'll keep you informed when I can!)
Your Funkyfairy Friend <3 xxxx