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! 

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! 

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! 

Where have I been?

I haven’t been on my Instagram account for around six or seven weeks -well thats a lie. I have been on it. I’ve been on there in brief, rare moments here and there. Checking up on friends, family members and some fellow spoonie pals. But i haven’t actually been on there and uploaded anything. Why? 
Well, I guess you could say I’ve been on a serious, and unintentional, ‘Instagram & Twitter cleanse’. Sure, I’ve broken this cleanse every now and then, but nevertheless this cleanse has still been on-going, and as i write this now -it’s still ongoing. I don’t know how this cleanse happened, but all a sudden I didn’t feel the need to use it or even feel like logging in. Lately, I’ve been feeling a little blue and slightly under the weather; as well as feeling bombarded by the number of things and sudden shifts going on in my life right now. It’s all been a little overwhelming. 
As a result of all these changes, the spare few moments that I’ve had free to myself have been, what can only be explained as, a god-send; for me not only to recharge in my solitude but also spend on studying towards my last assignments and exams of the year. Because of this I haven’t been on Instagram or Twitter much at all. I’ve had a browse through Instagram every now and then, and seen a few posts of some Spoonie pals but other then that nothing. I have to admit having that time away from social media came at just the right time and was precisely what I needed to recharge and refocus. I never thought what a difference social media made to my life. 
It was only last week, when I received a worried message from a Spoonie pal, asking if I was okay, that I thought maybe I should raise a flag or some smoke signals to let everyone know I’m alright and haven’t dropped off the face of the earth. All in all, this cleanse was probably the best thing for me, in this present time. I’ve had the time to myself, to grow and refocus on certain areas of my life which definitely needed a little extra attention. 
Ever had an insta-cleanse? 
Cheerio for now! 

your health’s, your wealth

Your nothing without your health
I completely agree with the saying above. My mom always said it to me when I first became ill. I think it was her way of reminding me that I’m not invincible, that I really do have to listen to my body and that there are repercussions for my actions. Without your health you are nothing. Your body is something that you have to take care off. Its not something you can take back to the store and exchange for another. But ultimately I’ve learnt through my chronic illness that yes of course your nothing without your health but your nothing without your family. Your family, friends; your nothing without them. They are your tribal community in which support and nurture you through anything you face. And as you journey through the good, the bad, and the ugly that life throws at you; you discover who are members of your tribe.

Cheerio for now!