As I plant the brass end of the rather fancy walking stick in the crevices between the stone tiles of the kitchen, I push once again to force my legs into motion. The left, thus far, seems to be reluctant to resemble anything less than a bag of sand but slowly I know it will catch up with the right. Turning, I grab hold of the kitchen cabinets to steady myself and balance the walking stick in the corner where the joins meet at a right angle. Using my stronger right arm I wrenched the metal handle of the concealed dishwasher and balance myself in a position where I can slowly start to put some of the cutlery away in some vain attempt to make my parents evening just a tiny bit less hassle. I feel like I’m the cheap car that no matter how many times you take it to the mechanics, it will just never run properly. I leave stress, worry, anger, sadness in my wake and every time I finally yank myself over one hurdle, the next one springs up and hits me full on in the face.
Earlier that morning I had awoken from a vivid dream in which I had another attack. Part way through I woke up at what I assumed was an early hour of the morning. When I don’t just doze off again immediately I know something is wrong. It seems my body’s way of saying ‘stay up something’s not right!’, as in the past it has always been the case - even for something small like an upset tummy. My attempts to shift about and shut my eyes tight failed. My chest was feeling as if something was sitting on it and air just felt like it was lacking something. Breathing became more of a thought process rather than am automatic function. As I lifted my head I could feel something wasn’t right, my chest was banging, and once again my mouth was drooped.
When I was younger I had never imagined at 26 years old that I would be hobbling round my parents house with a walking stick needing help and a certain amount of supervision. I never thought ahead on how many operations I would have, consultants I would see, how many needless diagnostic and invasive procedures I would undergo and the cocktail of prescription drugs I would be needlessly fed.
My greatest surprise came today on being discharged from A&E. The utter hopelessness I felt at my treatment and the medical system as a whole. Never before would I have thought that on clambering my way into the entrance from the A&E department that I would be terrified of an ambulance crew coming towards me in fear that they might take me back in there. Not because I had some form of horrible painful treatment awaiting me or fear of hospitals. My fear was purely based on the fact that they would not help me and I had lost any trust or confidence in them and the system they cling to.
The thought of going back in there scared me so much because these so called ‘clever Doctors’ do not seem to have the capacity to question the integrity or accuracy of the information on their system or passed on by word of mouth between colleagues. I used to think that Doctors were intelligent, caring and special people that wanted to help others afterall, they have such a great responsibility over the lives of others. Over the past few weeks however, my outlook has been altered. Making diagnosis’ based on poor or false information and believing it over the patient purely because a ‘Doctor’ wrote it indescribably unfair. It has become clear that some Doctors or ‘medical professionals’ belong to some form of silly boys club that trains you to patronise your patients, neglect to listen to what they say and close their ears to anything that might be an educated suggestion by the patient. Believing the patient has any sort of intelligence is left at the table prior to even doing observations. Any form of suggestions are immediately thrown out, as patients researching their symptoms in a vain effort to find answers is not the done thing and will only earn you some from of unexplainable psychological condition that, you can be sure, will never result in anything but anti-depressants or some Valium based drug.
When in doubt, blame anxiety. This seems to be a continuing theme with the medical professionals I have seen when the odd scan doesn’t show up anything of interest to them.
Everyone can look anxious if you want them to. Or perhaps they are upset because they are in pain and ill and no one is actually helping them? No, surely not. If you are young and have something rare that doesn’t show up in a blood test, you are of no interest in this neck of the woods.
Perhaps trying to fight your own corner will result in you questioning your own mentality anyway. I guess that is partially why I have decided to write this, because at the moment I’m not really sure where this lies with me. Am I creating a world of pain and hospitals for myself or can some people just not bother to do their jobs and force you into a state of mind that makes you question your mentality? Labelling someone with a nothingness is far easier it seems. My fear here is the loss of function in my body and in the roulette wheel of fate, what will break or be damaged next? As far as I can tell from this, it’s acceptable for a 26 year old to have (currently) about 10 stroke like attacks, collapse twice, pain in the chest and arm and loss of proper function in various parts of the body that vary in severity with each ‘attack’.
What I have experienced recently, regardless of the underlying illness or condition, is so profoundly wrong and I also feel it is wrong that any person should fear and actively refuse to go back to their A&E department or hospital due to prior experiences. This is partly the reason why I now believe that it is important to document all of this. The other being that I hope another person reading this will find some sort of support or strength from it. It's far too easy to doubt yourself, get fobbed off by people and put your trust in the wrong people.
The initial damage has been done, the words are set in stone and all further cracks spider down from that stone chip. Although these words might seem harsh with little explanation so far, hopefully it will all become clear in the end, I hope!
My trail of health, hospital and doctor nonsense does not only encompass my current predicament, it runs far further into my past than I would ever wish.. far too far. Luckily I have the most wonderful loving family, friends and a supportive, trusting GP.
You are never truly alone. Hope.
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