Tuesday 26 May 2015

Life Update: White Noise

Where have I been?

Well, this past (academic) year I have been a first year student with the OU, needlessly studying towards my degree from home. Of course I am only a part time student and most of time it's a case of studying from bed but at least I'm able to study! The past year has been a huge learning curve for me, not only in getting back into a learning environment but also in terms of my health and listening to my body; which is crucial for anyone, regardless of their health status!

I think because I am now back in education, many assume that I'm better and have suddenly been cured; however this couldn't be further from the truth. Looking back at this past year, in terms of my health has been the worst year to start a degree, but these things can't be predicted. Not only that but I haven't been in education for five years, so getting back into has been quite a transition; especially as I'm not the healthy person I once was and I can't push my body to such extremes as I used to. Going back into education has been a huge 'trial & error period'. I've had to readjust my study patterns according to my health, my (now useless) memory as well as my nocturnal body clock, urghh.

So that's why I haven't been around so much on here -any posts have been those scheduled in advance in light of the past month of numerous assignments and finals I've had to get through for the end of my module. The past few weeks have been utterly draining so it will probably take quite some time to get back to my usual self but hopefully once I'm there I will be able to post more -and hopefully get up to date on my bloglovin' feed, which has reached a staggering 170 posts! Did someone say summer reading?

Hope you are all well,
Cheerio for now!
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Wednesday 13 May 2015

When it rains, it pours

when it rains, it pours
this is a perfect phrase to fit explaining a flare. as a severe sufferer of multiple chronic illness' I'm faced with the dilemmas of everyday life and how they may effect me in the long run. on one hand I have to pace myself and only use my designated spoons for that day otherwise I run the risk of borrowing spoons from future days, flaking out and causing a flare. a flare is something I, and many other spoonies, generally refer to as a
huge unwanted speed bump in life, which resembles more of Mount Everest than an actual everyday speed bump
sometimes a flare is a result of borrowing spoons and ultimately flaking out, but sometimes it can also pop up out of nowhere, and for no cause at all. It makes everything a thousand times harder and more of a struggle than what it usually is. Any Spoonie will know how hard everyday life is anyway but with a flare it's like trying to save yourself from being immersed in sinking mud, yet you have weights & chains pulling you down. Which I, myself, feel like I'm going through now.
Let me give you a run down of a normal weekend outing, after spending the entire week laid up in bed or on the sofa.
You see on a Sunday I may go to lakeside, a regional shopping centre about a twenty minute drive from where I live, with my mom and nan. we usually get there, and park in the mobility car park which has it's own entrance to Debenhams. once we get in my nan will need a coffee and something to eat so we'll go upstairs into Debenhams own café. the café is so noisy for me. first of all there's the background music which consists of a mixtape/podcast stuck on loop. It includes pieces of music, offers and competitions going on in store, and audio adverts for brands and designers they endorse in store. they have this at an average volume until it's drowned out and the store tannoy goes on full volume to let someone know they've lost their kid and let them know where to claim them (I have hyper sensitivities, which include sound so it's more like sitting in a gig than a café). than there's the 'clanky' sound of plates; cutlery, cups & saucers being picked up and put down. there's people chit-chatting, the chick in the corner having a "no you hang up first" argument on her phone, the old deaf couple across the way shouting their conversation to one another for the whole world to hear and than there's the small boy throwing a screaming tantrum as his parents sit oblivious to the show their son is throwing. all of this has gone on, nearly all my valuable spoons have disappeared into thin air and my nan hasn't even brought over our tray of drinks let alone the fact we haven't even waited or had our food yet. so by the time we're done in the café we need to hop back in the car to get home so I can hibernate after being out for a maximum of thirty minutes.
so with that in mind you can see how the littlest things can all add up and cause a right storm for a spoonies body -into a flare of all flares. and so the brick wall comes crushing down on me and your left in a heap on the floor reassembling the bricks in order to get back to how it was. when it rains it pours.

Cheerio for now! 
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Tuesday 12 May 2015

That dreaded question

"You look well! feeling better?"
When I hear those words I don't quite know how to react. You see on the outside I look completely fine and healthy (baring the wheelchair of course). Yet how I feel is anything but fine or healthy. I have a chronic illness. I suffer from an insane amount of pain all over my body, throughout my muscles and joints. This type of pain is too intense to be eased by medication. Its an indescribable pain which I don't think I'll ever be able to find the right words strong enough to truly describe. I experience painful sensations such as skin crawling, muscle twitching and pins & needles (unlike normal pins and needles). Its as though my body is an electrical storm of aching, burning, throbbing and spasms inside me everyday.

I am constantly tired, and live feeling nothing but sheer and utter exhaustion. The only example I could give of my exhaustion would be its as though a hoover came down from outer space and sucked the life out of me leaving me nothing but an empty shell of a human being. On the rare occasion of when I'm out I may suddenly need to sit, lay down or close my eyes. And I often suddenly go extremely pale and wilt. Only those with a keen eye pick up on this and notice that I'm running on low. I suffer 'post-external malaise' (fatigue delayed over a day or two after too much activity) which often hits you like a ton of bricks and you find yourself laying staring at your ceiling either praying, cursing or sobbing yourself to sleep.

Its not just physical exhaustion and pain that I suffer but also mental and emotional pain too. I find it very difficult to remember things no matter how important they are; I just cant remember. I get confused very easily and constantly feel mentally exhausted. I have a lot of trouble concentrating and focusing on tasks such as listening and participating in conversations; its not that I'm not interested in what people have to say its just that its really difficult to focus my attention to that one thing when my mind just feels so spaced out. Things like that are simple daily tasks but, take so much out of me. I constantly get stuck on my words and have difficulty working things out, planning and thinking ahead.

I suffer from a recurring sore throats and swollen glands. I get dizzy easy; especially when getting up from sitting and lying down; I often feel like I'm about to collapse or need to go rest when infact I'm already sitting/laying down. I get hot and cold fever spells, and always have cold hands and feet. I'm hyposensitive to bright lights, loud noises, strong smells, etc. For example -when my nan smokes I feel like I'm being killed from the inside out. Its a sort of heartburn pain but in my lungs, the sort of pain which you don't know what to do with yourself so you just sit there holding your breath and hoping it'll die down soon. I hardly sleep these days and constantly feel like a zombie. I've lost my taste buds, along with it my appetite. It hurts my jaw to eat and I often have trouble digesting my food. I have abdominal pains, stomach and gut problems. When I eat I'm put in a lot of discomfort and feel like I need a special machine that lets me sleep for 24 hours to get over my meal and get ready for the next meal. I have panic attacks and get anxious about everything, sometimes over nothing at all -yet I just can't help it. Tightness of chest and chest pains is a serious recurring problem of mine too, as though there's a tight belt wrapped around my chest and I struggle to get my breath. I am sensitive to certain foods and completely intolerant to many. My body reacts badly to medication, alcohol and chemicals including artificial sweeteners like aspartame which result in my heart going at a rapid pace.

So as you can see when someone says "you look well! feeling better?" I don't know quite how to respond because all this is under the surface. If I sat trying to tell you all this A) you'd think I'm a hypochondriac B) we'd be sitting there an awful long time especially given the fact that I have trouble getting not only my thoughts and words in the right order but also verbalising it as well. Not to mention the amount of energy it would take out of me and how insanely tired I'd be. Chronic Illness' are a lot like polar ice caps. As you go past them you see what's floating above the surface, but if you were to put a diving suit on and take a plunge on beneath it you would see it's a lot bigger and goes deeper then you could ever of imagined.

Also I think I speak on behalf of all spoonie's out there when I say that "you look well! feeling better?" is on the top 10 list of things not to say to a chronic pain sufferer, especially if you value your life. Just saying.

What phrase or questions do you dread being asked? 
Cheerio for now! 
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Wednesday 6 May 2015

Book Review: The Picture of Dorian Gray

The Picture of Dorian Gray, Oscar Wilde. 


I have been wanting to read this book for many years, but over time obstacles, and life in general, have got in the way. The Picture of Dorian Gray has always been lurking on my ‘to read’ list and I have always been oddly drawn to quotes by Oscar Wilde so last year I finally bit the bullet and plonked that book at the top of my reading list. That top place is sort of a sacred spot on my list and serves as a huge billboard for my friends and relatives to gage how badly I want a book depending on its status (ranking) on my list; which is usually drafted and then handwritten until it’s just right. I know, I know -I sound sad; but whats a girl to do when she’s bedridden and has nothing better to do with her days but dream about the books she wants to read. 

I received this book for christmas, and cracked it open over the holidays whilst on my break from uni. I was definitely drawn to the story within the first few chapters but between pacing myself for christmas and family events I didn’t manage to complete it before returning to my uni work. Over the past few weeks, of reading, note-taking and general work and preparation for my final assignments, I have found myself relentlessly finding any and every possible distraction to try and avoid doing those important tasks. This led me back to my half-read book and I once again returned to the gothic novel, though this time I was accompanied by a large mug of tea and a few pieces of cantuccini. 

The Picture of Dorian Gray starts at Basil Hallward’s studio where he is to stand and have a portrait painted by the artist himself. While there he encounters Lord Henry Wotton, whom he becomes increasingly fascinated with and befriends in an instance. Dorian, an eighteen year old young fellow at the time, is convinced by Lord Henry that his most valued possessions are his beauty and youth. Later, having seen his portrait and heard both Basil and Lord Henry marvel at his youth and beauty, he’s prevailed by his emotions and wishes that the portrait would age with time rather then himself. After, he continues with his days and enjoys the company and cynical words of Lord Henry, without thinking of the portrait -til one night, he notices its appearance has changed and he realises that the words he exclaimed in Basil’s studio had came true and the true nature of him and his soul was being displayed on the portrait rather than himself. 

The book is noted as a modern classic of literature, as well as the only novel wrote by Oscar Wilde acting as a showcase for his writing talents. The story itself is fascinating, with long-standing morals of society and slightly comical moments throughout. Wilde’s storytelling talents are mesmerising, complete with beautiful, almost poetic, imagery and complex yet innovative characters; all including personal traits of the author himself. 

Favourite Quote: "But the picture? What was he to say of that? It held the secret to his life, and told his story. It taught him to love his own beauty. Would it teach him to loathe his own soul? Would he ever look at it again?"

What Classic's have always caught your eye? 
Cheerio for now!

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Tuesday 5 May 2015

M.E. Awareness Week





With ME Awareness week approaching I’ve began thinking of the many posts that align with this event, and hopefully raising some much needed awareness. It was then that I clicked onto my Twitter feed and saw that a fellow spoonie, Anna, was running her Blue Sunday fundraising again this year. The idea of Anna’s Blue Sunday is to have a brew and a slice of cake, and donate an amount you would pay in a café which will go to the ME Association. 

As someone who is all for fundraising and raising awareness, i asked myself how could i help? Then the lightbulb went off. I decided why not hold hold a coffee morning throughout ME Awareness Week? After thinking the whole thing through, and a quick message to Anna; I signed up to justgiving and made a page for awareness week. 
**I might add; whilst making my profile page, I noticed something moving out of the corner of my eye and saw a tiny money spider was climbing across my keypad; I’m taking that as a good omen! 

Throughout ME Awareness week, May 11th-17th, various business’ in my town will ply their customers, colleagues and friends with brews, beverages and cakes as well as spread awareness of this invisible illness. I think raising awareness is key, especially for chronic and invisible illness’ such as M.E; which are often labelled as ‘all in the head’ or ‘yuppie flu’. It’s important for people to take the time to educate themselves on invisible illness’ such as this, and spread on the awareness too. 

I think, as much as we all hope and pray for a cure or some sort of universal treatment to ease some of our suffering, raising awareness within itself is another form of cure/treatment. I know, myself, what a difference it can make to feel as though people understand or at least try to understand what your going through. It makes everything a little less lonely and isolating, which can make such a difference on your emotional well-being and that in-turn is almost a ripple effect on other aspects of your health. 

So mark ME awareness week in your calendar, and remember to boil the kettle, have a slice of cake (or two) and think of those, like myself, who suffer with this invisible and chronic illness on a daily basis. 
Extra Brownie points for those who google it! 

You can check out my justgiving page here

Expect lots of prep posts and chronic illness inspired posts, 
Cheerio for now! 

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