The very best piece of advice I’ve ever been given: never go back. Not to the job you never loved. Not to the bloke who was never right. Not to the place that was never home. Thing is: it’s an almost impossible mantra to live by. Sometimes you find yourself back in the job that pays the bills, or to the house that’s always going to be home. I think there’s a real difference between going back, and going backward. Sometimes you need to detour through the past to reach the future. Never has that been more true to me than now.
Firstly; I’m back to a blog I thought I’d finished. I’d even forgotten the password. I’m working at the school which I grew up at and I’m building up a social life in a town which I haven’t had good mates in since I was 11. It’s a funny place to be. I was out with some mates last night, and it was as I was driving home that I realised being back in a place that you’ve been before isn’t going backward. It’s not possible to be the person you were when you were there last. You’ve grown. Even if it’s just a little.
My immune system decided to go on a little holiday - leaving me to battle with health demons on my own for a few months. By the time it decided to fly home, I was battling pneumonia and a major inner ear infection. Thankfully it returned from holiday with a bit of fight and I found myself a little strength to fight through. Sitting talking to the doctor, she told me that the infections had knocked me back 6 months in terms of my Fibro fight. You can imagine how pleased I was with that! It was only last night that I realised that it didn’t really matter. It’s not as if those 6 months have been completely wiped out. I’ve learned new things, and synced a bundle of new music to my iPhone. Rather than 6 months back, I prefer to think of it as a month ahead of where I was last month. A day further on than I was yesterday.
Never go back. Thinking about it again? I don’t think it’s possible to ever go back. Or backward. You’ll always be a week ahead of you, as you were last week. More importantly: feeling low and sad is normal. Being put back a few steps on a health battle is always going to happen. But it’s just that area of your life that’s moved backward. You haven’t. So welcome back spoonies. I’ve missed you.
Endings are funny things, mainly because the word itself is a complete oxymoron. Like a soft piece of hardwood, or a thin fat guy; the word itself has a double meaning which on a first read has very little significance at all. But think about it: what does it mean? It means that something is over, done. However, if something is over - it means something else is beginning. It’s not what it would seem - an ending is more of a change; a brand new opportunity to retry and rebrand the situation in a new chapter. An ending is not an end. It is a start. It’s weird. That revaluation has kinda turned my world upside down; it feels like I’ve been looking at things the wrong way up for far too long.
So what was this blog originally about? To summarise the very first post: sometimes life throws you a curve ball - and you need to cope. How did I choose to cope with Fibro? I chose to wallow. In self pity, in confusion, and by complaining with other people who just couldn’t understand how on earth they were supposed to hold on tight and follow the latest ride to the end. I just couldn’t get a grip to help me stand up again. I guess I might have found my own way to stand up again.
Since the fibromyalgia began, the first thing id tell people about myself would be that I suffer with Fibro. When people asked me how I was doing, I’d give them the latest instalment of Fibro, Sam edition. My life was about googling Fibro. Writing about Fibro. Talking about Fibro. Researching Fibro. GET A LIFE. Honestly. The bloke down the street with asthma doesn’t spend his entire life talking about it. And whilst I’m not saying they are anything alike, I’m not living my life, ive been putting on hold to live in Fibro land. It’s not healthy and it isn’t working. I don’t feel any better for it. I feel worse.
I’d become depressed, exhausted and lifeless. I didn’t feel I had a life any more and would regularly tell people had Fibro had stolen my life. However I was wrong, my life was never stolen - I chose to give it away. So how do I move on? Or stand up again? Well - that I’m not so sure of. Rather than worrying about what I need to do to help my health tomorrow, ive started worrying about what I want to do today. And I’m actually enjoying life; I’m doing things I enjoy doing. Writing, taking photos, spending time with people I care bout. I spoke to one of my best friends about this, and she also has Fibro. She pointed out how I would insist I CAN’T do things. When in fact it was that I didn’t want to. Granted it was for health reasons that I didn’t want to go on a 5 mile walk: but should I have needed to? I probably could have. Constantly using the word can’t, and talking about how sick I am? I might as well plan my own funeral.
To start my own new beginning, I need to find an end to what was. This is going to be my last blog post. No doubt I’ll start another blog - something less Fibro focused. Significantly less Fibro focused. This blog is ending. And so is my self pitying complaints about being ill. I intend to Man up. And fast. Its not easy and I’m finding it hard to change the habits I’ve picked up over two years, but I’ll get there. I know I will. Getting social might mean I have to spend a bit more time having a small lie down, but it will mean I will feel it was that much more deserved. So Fibrowhat? Thank you. And goodbye.
Have you ever accidentally said the completely wrong thing? Once in school I remember accidentally making a flippant use of the insult, your mum. The guys mum had died barely a week before. It wasn’t deliberate, but rather a simple case of having not engaged my brain. Whilst in this situation the link is both obvious and understandable (the guy burst into tears) in other situations its just not that easy. Another time in geography, we were studying waves and beach formation (or similar) and the teacher mentioned the strong constant “beat” of the rhythm of the waves and I was instantly transported a few weeks previous to when I watched a guy in a hospital attached to a heart monitor, whilst my Nanna lay next to him still, dying. Sometimes it takes an entire sentence, other times just a few words, to strike a chord. It could be a song that was playing at the time, or a film with a lightly similar storyline. I’ve read books that remind me of things I’d rather forget and I’ve seen Facebook statutes that sent shivers down my spine as I relived the moments that now don’t bother me, but at the time were gut wrenching. You really are taken back, if you were 5 in the memory, that’s the age you go back to. However sometimes those chord striking moments don’t send you back, but rather show you a different point of view to your current situation. Rather like the ghost of Christmas present in the Christmas Carol, sometimes you’d rather not be shown the other side of your story and today there really is no better way to describe how I felt earlier. Even now some good 7 hours later, I’m still not right again, and the ideas still swirl round my head. Bex brought a DVD down with her for us to watch, it was one of these bargain basement, cheap movies you pick up at the checkout so neither of us had that many high expectations for it, even if it stared Hilary Duff. It’s called “surviving summer” and the story revolves around a girl whom wants to kill herself and sees no light in the world, learning that actually she isn’t doing what she thinks she is doing. She sees how the ordeal affects her family and watches the effect her attitude has on a potential love interest. Put perfectly at one stage by the said love intrest, a cute Georgian accented chef, she doesn’t want to die, she wants to be saved. It instantly turned the air I was breathing ice cold. All of her suicide attempts and talk was for somebody to jump in and help - they were not to really kill herself. I’ve heard people label this behavior as attention seeking before, but this turned the table over on my previous ideas. It was not a councious decision to cry for help; she genuinally thought she wanted to die. Also the attention seeking wasn’t for the attention as I would call it, ie social interaction, but rather a desperate attempt at getting someone to dive in and save her from something she didn’t know she was scared of. At first I really struggled to understand why I felt so instantly connected: why did I feel like I was her? I don’t want to kill myself, and I certainly haven’t made my bucket list. Suffering with fibromyalgia has made me quite considerably depressed, and yes I do sometimes think about, and occasionally have a fleeting moment of insanity where I plan how, suicide but I don’t think that’s a cry for help. Is it? I was instantly sending Matt a message: I’m sorry. He has always been privy to my actions and thoughts, even if I only talk things through with him afterwards. I knew that even if I hadn’t worked out quite how I was her yet, I was her and the stress I was putting on my most loved person in these situations is just not fair. To state the first fact, I do not, I repeat not, want to die. To state the second, I also acknowledge that when I’m that low, it is a form of attention seeking, or rather a desperate cry for someone to save me, from something I know they can’t. So where do I go from here? Knowing this doesn’t change my need to be saved, and my god that feeling is so strong. In the film (the main character) Greta realises her need arises from her missing father, and she resolves some of the emotions around this to help her save herself. But how do I save me? It sounds like a relatively simple question but actually, I’m not entirely sure which parts of me are me anymore, and which parts are depression, or fibromyalgia. I don’t know who I want to become and I don’t know how to get there. I also remember having this need to be saved for a long time pre-fibro. And I don’t know where it comes from. It must be from something that I’ve been missing, something that still burns. But i’ve no clue. I do however now understand a bit more of some of my random needs. I’ve rearranged my room in hope of filling that need, reorganised files and stuff on my computer and my phone. I’ve purchased new products to help me get organised, and I’ve researched courses for a degree in hope of saving myself. I went to bed to think, and awoke some hours later, having had no revelation. Me and Bex played on the 360 for a long time, and I was absolutely amazing at lips; it has to be said. I believe I was in the top 500 for one song. Go me!! Soon I was having actual fun, laughing and enjoying myself. No matter how small a chance, I believe it is my looking for something to fill my void, or save myself, that has caused all of this. Maybe it’s caused me to miss out on all the fun things in life? That could happen… Right?
When I was a kid, I used to eat cereal religiously every single day. Me and my little brother used to race to the table to ensure we were the first to pour out our bowl. It had nothing to do with wanting the actual cereal. Just like when mum took us shopping, our decision was not based simply on what flavour we wanted our popped rice to be that week, and a whole lot more to do with what they were giving away. They were the most magical, necessary and exciting treats. I once got a winnie the pooh projector keyring, and another time I got a whole little box of Lego. Granted it was the source of many a fight between me and my little bro, because only one of us could have the toy, and me and him have never done sharing. It’s just not our style. But looking back it was a great way to ensure we ate our breakfasts. If there was an iPad inside my box of shredded wheat, I can guarantee I’d be eating cereal more than once a month. There aren’t iPads in the boxes though. In fact when I wandered down the cereal isle yesterday there were very few cereals offering anything other than the chocolate corn flakes inside it. And the ones that offered anything slightly inciting, demanded you collect 200 million boxes and send them off with £4.99 postage and packing. It’s just not the same. There’s no instant redemption. Even kinder eggs don’t give you the same solid toys you used to get. I bought one around easter and I joke you not when I say I got stickers. Not much bigger than a postage stamp. Not the adorable frogs I used to love to collect. As an adult, life is a whole lot less fun. You don’t get much for free anymore. In fact, I’m not sure I get anything for free anymore. But that has a lot to do with how you look at things. I have to take my fair share of medication, so much in fact that I have an old people pill box to help me remember it all. The reason I buy the medications is because I want the benefits advertised. However, as it was pointed out to me yesterday, I get freebies with every pill. Some tablets give me added dizziness. Some knock me out. And others make me hurl. Each time I take my increasingly large number of pills, I get the excitement and surprise of finding out what today’s side effect, or free gift, will be. Granted it’s nowhere near as fun as the stickers from my kinder egg, but at least I didn’t pay for the naff side effects right?
There are far too many unanswered questions in the world. Firstly, why is there more than one religion? Who made us all? Why on earth hasn’t some talent agent spotted me and signed me up for some leading part in a top Hollywood film? However the one i’ve been thinking about today is: Which came first, the chicken? Or the egg? I remember the first time one of my teachers posed this question to the class… I can’t have been older than 8 or 9. We had to stand on different sides of the classroom depending on which we thought was first. I chose egg… Because whatever chicken laid the egg… Had to have come from an egg. As a twenty-something that logic makes zero sense however I remember the classroom ‘debate’ (read as argument) that ensued. Not purely from the noise or the amount of shouting, but my head really started to hurt. It was physically giving me brain ache. My head kept going further and further back, like a ping pong ball walking from one side of the classroom to the other. I don’t remember if we, as a class, came to any form of conclusion but many years later at uni, someone finally put this question to rest. Eggs came first because dinosaurs were born from eggs, and they came before chickens. Finally, it stopped being a battle in my head whenever I thought about it… Until drunkenly someone confused me further: “which came first? The chicken, or the chicken egg?” Solution unreachable. Not surprisingly I often find myself in a similar situation to the 9 year old me standing in the middle of the classroom crying because I didn’t understand. (possible overshare.. May edit out. Or not. Come back later.) I had a hospital appointment today, one which in all honesty I’ve been counting down the days to for weeks. Im awaiting the results of an MRI. I know there’s nothing there… But I still kinda wanna hear for sure. Anyway.. 20 miles of petrol later and a £4.50 parking charge, I walk in to the hospital to be informed the doctor wasn’t in today due to “unforeseen circumstances.” However, ‘lucky’ for me they have another appointment available in 6 weeks time, and no, they wouldn’t give me a parking charge refund. At first I was angry, then I was quiet, then I went back to angry. How dare they hold me on the edge like this for 6 weeks? Eventually the calm numbness kicked back in and I realised… I don’t care anymore. I just simply don’t give a flying duck. (deliberate attempt to not swear, not a typo!)
Sadly my new found calm was not down to inner poise or a form of acceptance. It was a realisation that I actually couldn’t cope anymore.. I wasn’t willing to allow the stress of all these appointments, scans, and opinions bog me down any more because I couldn’t physically deal with it. Flick. The switch was off. Out of order. Brain: vacant. For your own piece of mind, I should point out that I wasn’t driving, so no pedestrians were harmed in the making of this blog post. When I got home, I took my lunchtime medication, and went to bed. Not to sleep, and not to rest. Not even to read or play games on my phone. I just needed me space. I needed to find a way to cope with this. I knew the numbness I felt is both damaging health wise, and socially. I’d hit a wall where I literally cared for nothing. So how does this relate to the chicken and egg conundrum? Let me ask you this; did I loose the ability to cope because I’d lost all hope? Or did the loss of the ability to cope, take with it my last shred of hope? I couldn’t move forward until I figured this one out. Until I knew what caused the outcome.. I couldn’t correct it; I wasn’t even sure which one I was lacking. Coping. Or hope. Coping is defined as “to deal with problems or duties.” Hope is described as “the feeling that something desired is possible.” It boils down to: did I stop believing that things would get better first? Or did I loose the ability to keep all my juggling balls in the air first? These questions are still no easier to answer. Like the chicken and the egg, the reason I lost the ability to cope was because I’d run out of hope, and id run out of hope because I couldn’t cope with the situation any longer. I was tired of painting on a smile. Id never realised before just how closely linked hope and coping are; I just knew I needed to find a little bit of one, to see me through to the other. I set a target. I hoped that by this evening; I’d feel less self-pity. I do. And you know what? I feel that bit more able to cope. Maybe long term goals and dreams aren’t the best thing to focus on; maybe I’ve been doing this wrong all along. How do you eat an elephant? Bite by bite. And from now on I’m living on a day to day basis. Its easier to hope for a better 24 hours, it’s easier to cope for 24 hours. And it might even keep me that little bit more sane. I recon they got the definitions wrong. To hope: is to cope. And to cope: is to hope. Think about it. And it starts to make sense. Sadly, however, a chicken is not an egg.. Or is it?
Enough with the preamble and mystery. I’ve been waiting to write a blog piece like this for a very, very long time. Today was not a good day. Today was not a bad day. Neither was it somewhere in-between. Today was a day in which the only time I was aware of my fibro was when I took my medicine. I’ve not been too tired, or painful. I mustn’t get ahead of myself, sadly it’s highly unlikely that I’ve been magically cured however looking in the mirror just not, I saw someone who I’ve genuinely not seen in about two years. My eyes were fully open. And shiny. My mouth wasn’t dry, and I didn’t have huge dark circles under my eyes. Today has made me so happy it’s really quite difficult to find the words to express exactly how much difference it’s made.Id put up with 10 bad days, for one good day. And in general I guess it probably works out with me getting more good days than that, which is good. However a day like today, where I could appreciate health, and vitality, and energy, it makes the entire struggle worth it. The enjoyment I got from doing normal people things today was astounding; an enjoyment that most people don’t experience regularly. But I was actually enjoying taking the dustbin to the road this evening: because I COULD. This blog post feels a bit backward but I was actually so excited to put that down on paper (even hypothetical computer paper) that I didn’t want to waste time talking about something else. On a day like today, time is precious. And you know what? I’m lucky that I get to know that now, at 22, before I’ve got no time left to appreciate.Hmmm. Deep.
I’m sure this is going to be one of those situations where once I say it, I jinx myself, but I really have never had writers block. Not in the traditional sense anyway. If I have a problem writing an article, blog post, or even an email to a mate, its not that I don’t know what to say, but more that I have too many ideas and sentences swirling in my head that putting them down on paper is possibly the most difficult task in the world. By the time I’ve written idea number one, my brain is already on number three, and I’ve completely forgotten what point two was about. On top of all of this I then need to go back through what I’ve written and translate from a garbled piece of literary failings, through to a well thought out, planned piece. Needless to say this results in most of my writings only being slightly understandable after the 3rd or 4th draft. Whilst time consuming, I kinda like it because it means there is enough time to actually go through and fill in the gaps with the ideas i’d forgotten in my typing haste. Of course there has been the occasional time I’ve trashed a piece all together, and started again. In fact, I first started writing this piece Sunday, and it was titled “lazy Sundays.” Whilst I liked what I’d written; it had lost the plot halfway through and to be quite honest, too much time had passed for my brain to help me fill in the blanks. No doubt at some point in the future “lazy Sundays” will reappear, but I need to work out a little bit more content for it first.When were talking about writing essays, diary entries or notes to stick on the fridge, countless (within reason) rewrites are to be expected. Infect if we were to go with our first draft, the unreadable bable could possibly end up with me in a padded cell - I have to make sure it’s almost understandable before clicking the post button. In real life its just not that easy. There is no backspace and no delete and there is no opportunity to stop for a cup of tea when you can’t think up the right word. I don’t know if it were stress, or part of my condition, but earlier this week I had real problems with naming items. I could tell you what something did, or when you would use it, but I couldn’t even begin to guess it’s proper name. It lasted a few hours and then went away again (much to my relief) but it decided to rear it’s ugly head again today at work, in a slightly different scenario. I completely failed to remember anybodies name. It’s possibly the single scariest thing I’ve experienced. I looked one of my best mates at work dead in the face, and was completly clueless as to what they were called. Now that’s most certainly not writers block, but ive never heard anyone complain about speakers block? In fact most of the time people moan about my verbal diareah, which in fact is the complete opposite. I guess it’s one of those things that you have to put down to stress, or to tiredness. Maybe I was just having an off day. Whatever the reason it stuck because it’s the first time fibromyalgia has manifested itself in a new way, and in such an embarrassing and degrading way.Lucky for me, it passed as soon as it ended. But it really does go down on my list of fibro funny farm moments. Note to self, must write blog post entitled fibro funny farm moments.
Superheros are great aren’t they? They are magical and all powerful. They are the god to believe in before you are truly old enough to understand religion. Whether it’s a 4 year old who dreams of being a power ranger, or a bullied 13 year old who hopes one day superman will turn up and beat the bullies at thier own game, we all have some form of superhero worship, even if its just the woman up the road, who arrives to pick her kids up from school, always on time and dressed head to toe in designer chic. I believe it’s an inbuilt complex we all have: this desperate desire to be a better. To be the one who’s looked up to. To be the one who never needs ask for help. As Shakespeare once greatly said, the real question is: to be? Or not to be? That is the question. Ok so where on earth am I going with this? Recently I’ve spent a lot of time evaluating where my stress comes from. It’s a well known fact that huge amounts of stress are extremely unhealthy, and it can exasperate fibromyalgia severly. For longer than I can remember, I’ve always felt like I had some huge load to carry, a weight over my head that threatened to fall at any minute. That had to come from somewhere, and because for anyone - this was a dangerous position to be in, I had to get it sorted. So where does it all come from? I sat with empty paper in front of me and a pen in the other, and I started to write. I wrote down specific things that I felt caused me unnecessary stress and where they came from. Of course the same old ideas came up, work, family, finances but from what I could see, there was no urgent stress being applied - so why did I feel so terrible? In psychology I was taught that sometimes when you take things apart too much, you can loose the actual spark or point that you’re supposed to see. For example, you can take apart a car but without it all being put together, you can’t understand WHY it works. You need to be able to see the bigger picture. I’ve always been a very graphical learner so with fresh paper I began to draw again: this time seeing the bigger picture. How did my worries and stresses link together? Who was putting each idea into my head? Why was it so important for me to stress over each point? I wasn’t at all surprised to discover that it kept coming back to myself. It was ME who decided it was important to go to university. It was ME who thought that having the latest gadgets was essential to success. No one else. Me. Not even a superhero could live up to the expectations I have in my head for myself. But knowing that doesn’t make it any easier. In my head I am not currently living up to my own ideals, and if I can somehow remove them, then maybe I’ll be able to make some progress on living up to my own dreams. Its a catch 22. And i’ve no idea how superman would get out of this one.
The world of Disney is a beautiful place. The wonder and magic that flows from film to film males everybody smile, whether you 8, 28 or 88 years old. They are such a contrast to real life, a form of escapism on a grander scale. It allows us to slip into a world of elegance and royalty and for just a moment; you believe the happily ever after. You believe that it really can be as simple as those 3 little words. Its as the credits roll and the lights come up in the cinema that you realise that the animated film was animated for a reason. Not only is it not real, but it’s so laughable that no actor can act it with a straight face. A year later and a sequel comes out, which will first of all shatter the illusion of happily ever after, and then expect us to believe in yet the same myth at the end of film 2. And 3. And these days, 4 5 and 6. But we still go back for more. Everytime. Why are we so desperate to believe in a happily ever after? There are endless self help books and cliche sayings that try and help us see that life isn’t about the destination but the journey. Even the idealistic movie producers know that happily ever after is boring; that’s why it only ever fills the last 5 minutes of a film! And yet ask any child what they want to be when they grow up, and they shall have a quick, short answer, their own vision of what it takes to be happy forever, whether it be a doctor, married, a princess or rich, the children don’t want these things because they will enjoy the problems and dramas that come with them, but for whatever reason, at that moment they believe that becoming something is all it takes, and bam. Their own Disney style ending. When I was a little kid I used to dream of falling in love. I didn’t know what that meant, and I most certainly didn’t dream of the trials and tribulations that could come with it. But I imagined that it would make me happy and complete. It’s not enough though. I’ve spent my life living off my own achievements and dreams. I’ve gained energy from the buzz of being popular, or intelligent, being the best I could be. I was in my own sheltered view of happily every after and my god that was a dangerous place to be. As soon as the praise dried up, so did my confidence and my power. My ability to believe in myself has completely disappeared. I don’t have the will to dream up my next target, and ironically it’s the thrill of completing one of those plans that I need to give me the will to get up. For the first time however Disney has given me some fantastic life advice, i’m just not entirely sure how to use it. When things go wrong, and the happily ever after shatters, you move onto the hope of a new one and I think it’s time I start working on my own sequel. Not trying to redefine my already written end of part one, I’ve tried that for over two years. That section of my life is over, and the last few years have been the first chapter of part two which is being written in a completely different way. I’ve no idea how this section ends at all, no clue of the overall story arc but I find it comforting to realise the start of my sequel is already written, and that every day is the way it needs to be.
