(Dis)abled

I have wanted to write this post for a while but have never been able to piece together my words and thoughts in a way which could convey my feelings on the subject correctly.

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You see, seven months ago I met a guy. My boyfriend James. It was pretty much an instant attraction between us and everything followed on quite fast, but it was right. At the beginning I found myself panicking about my health. How would he take it? Would he be okay with my M.E? Would he expect too much from me? Could I keep up with him? A million questions reeling through my mind. But he took it fine. In fact, he now says that I over exaggerated about the whole thing because I can do things and, I suppose, he is right.  

I have never been all that fond of the word ‘Disabled’ and the image it brings to mind. It brings about this idea that you are unable to do anything at all, not just physically but that you are mentally and emotionally unable in every form: and, I hate that. The idea that we are folk that can do nothing. Empty vases sitting on a window ledge, collecting dust. I hate it because I can do things. 
I can think for myself. I can make decisions. I can live a life like anyone else -sure it may be at a much slower pace on some days or I may be in my wheelchair or need extra help: but I can still do things. I am still a human being living my life and fulfilling my dreams and I will not miss out. 
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I suppose since being with James this seeded thought in my mind has grown more wild as time has passed. We have been living our lives together and experiencing wonderful things alongside one another for the past seven months. Over that time I have realised that I can do the things he does, but just in a different way or at a different pace. Like when I wanted to see the view of Hastings from the cliff top with him. Abandoning my wheelchair for a few moments, he helped me up and down the steep, uneven slopes so I could take it all in with him. Or when he helped me around Camden Market on a busy Saturday and kept insisting I sit down and rest. 

 
Regardless of those little things and obstacles that may stand in the way, I will still go forward and find a way around them -because I can. I can still do things. I can still live my life in a way that suits my health. I may be disabled in a medical way or in the eyes of government or the council: but in mine, I am still able. 

Cheerio for now! 

A letter to twenty

You were the year of twenty. The year I didn’t greet well and the year I’m kinda glad to say goodbye to. Having said that, there is a bittersweet element to bidding you farewell.

 
You marked five years of living with chronic illness’. You marked years of failed attempts at trying to regain my health, feeling isolated from and misunderstood by the world and more importantly feeling as though I’d failed at making something of myself and making my family proud. ‘What have I achieved?’ I asked myself a week before you arrived; causing an avalanche of meltdowns, panic attacks and a whole lot of tear-stained pyjama sleeves. While loved ones tried to console me, I couldn’t be consoled. Your arrival wasn’t to be as happy an occasion as what it usually was and so a smile went on with the layers of makeup, and I grinned and bore it through my birthday tea. I did have a better time than I thought, though when I returned home so too did the thoughts of turning twenty. 
 
Looking back your arrival was hard; just like a lot of moments from your year. I had to drop a lot of uni work because my body wasn’t up to it, I had to flake on friends an endless amount of times, I had to miss out on spending a lot of quality time with my mom at the beach hut and I had to deal with the reoccurring fact of how weak my body has become; a realisation that hit me harder every time I saw it. 
 
Having said this, I’ve also never felt more me. I’ve never felt so in sync with my body. It’s almost as though I’ve deciphered how it works and while that doesn’t take the pain, exhaustion or suffering away; it does make it slightly easier to handle. I’ve also learnt the power of self-care is immensely important in my weekly routine. It’s of great importance, to everyone I think, to stop and take a moment to yourself. Whether that be listening to a podcast, applying a face mask or nail polish or even just taking the dog for a walk and watching the world go by in the process. 
 
So yes, I wasn’t looking forward to you, the year of twenty, and while I’m happy and ready to say goodbye to you I’m grateful for all you taught me -even if your lessons were tough at times. 
Cheerio twenty! 
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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! 

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!