"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?
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