Hurry up and wait! #chronicillness #Survivor #autoimmune #disability

It is a well known saying that ‘… time flies…’. There are a few exceptions to this rule, but chief amongst them are when being diagnosed with several autoimmune illnesses and when you are  in medical waiting room or hospital. In both these instances time is agonizing irrelevant.

The problem with medical waiting rooms is that they are full to overflowing with sick people, but most autoimmune’s are beyond sick and yet not quite dead. After you have had an Autoimmune diseases/s for longer than a few years you only go to the doctors for one reason and one reason only. Scripts!!!!

If it wasn’t for needing these little pieces of paper (and the occasional flu shot or infected body part) we would NEVER go near them. Not for all the money in Pfizer’s vaults! They are painful experiences (physically and emotionally). Here is why…

Firstly 99% of the people in medical waiting rooms have come for a sprained ankle, a lingering flu, a hangover, a sick letter for work or maybe some rash they spotted in the mirror while shaving. These people will file in, grab up the dull selection of magazine or use the time to put in some solid Facebook hours. Occasionally they will shift uncomfortably in their seats or even step outside for a phone call or a cigarette. Some of the newer medical centers have a TV mounted in the corner so people can stare at it as the hours slowly pass by, listening to daytime TV, news updates and soap operas; in a zombie like state. For patients like me its the equivalent of having someone beating you with a sledgehammer in the joints, a drill in the skull, a blowtorch to your skin, a metal brush to your feet and – the noise, the lights, the children screaming or crying – It is exhausting and all I want to do is lay down in the fetal position in the corner of the room and cry! This is also true when its time to go to the specialists office, maybe minus a few crying children and there are no plasma T.V.s. Still you are not spared any second of waiting, or pain, or inconvenience, or exhaustion, or mind numbing anguish. “If they meant 5:00 pm, then why did they tell me my appointment was 9:00 am and make sure I am 30 minutes early!?!” Doctors, nurses, specialists and hospitals all seem to forget the most glaringly obvious fact, and that is that you are there because you are in terrible need and in great pain and discomfort. You arent just filling in time. You are not bored and thought you might drop by. I would rather fingers gnawed off then be there! I have given my husband strict instructions that the next time I go to hospital it is because I am either already dead or in a coma and wont remember it anyway. I would rather risk further serious injury to myself then go through another waiting room door. I am proven this on many many occasions!

You see there is no place of comfort for the chronically ill, Autoimmune and disabled, but our own private homes is the closest thing we will ever find. So that’s where I want to stay. That’s where I WANT to stay, but I need those scripts!

Occasionally, after MUCH begging and pleading, my husband has managed to coax our GP to visit us at home but I have been half blind, unable to move and gripping the bed for fear of falling out. My pain level is so high that I can actually see it sending a glow around my body, and I am barely able to utter a cohesive word that doesn’t sound like I am crying, trying to swallow burning coals, throwing up and choking all at the same time. I can barely tell her what’s wrong with me, so my husband speaks for me while I stare blankly at the ceiling. It’s usually at this point she suggests that I should go to hospital and it is usually at this point I start sobbing and muttering “no!” There we are. The classic autoimmune stand off. That’s where we hover; somewhere between needing the care and resources of to a hospital yet wanting the quiet solitude of our own beds. That is my eternal dilemma until someone, somewhere finds a cure.

An AI-er can tell you about every doctor, every test, every drug, every specialist, every side effect, every emergency alternative and work around, all without even batting an eyelid! The most experienced AI-er will even tell you all the public toilets in a 12 mile radius, what to carry in your medical bag (that’s what you healthy people call a purse) and can even tell you (without fear or contradiction) what temperature you are, what flare you are having, when your last infusion was, and what your bloods tests/scans/medications you are about to have within about 5 seconds of looking at you. We can also tell by the look in each others faces how close to death we feel. It is a special power that you develop, a kind of telepathy when words are not enough. Today I had to go get my little pieces of paper and I would rather have my kidney pulled out through my nasal passages and I was sobbing uncontrollably for most of it. After waiting for an hour and a half I stagger to the doctors office migraine screaming, blind, shaking, limping, dizzy, nauseous and near death to be asked “So how are you feeling today!?” (Today!? Today?! I am the same as I have felt for 8 years now; close to death) “Same,” I answer, and hand her my shopping list.

I know I have to go back again one day but I cant think about that now or I may lose the will to live. For the Autoimmune, a medical waiting room or hospital is just no place for a sick person!

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