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A+E again… and a letter to London

May 23, 2011

The novelty of travelling in an Ambulance is starting to wear thin now… yes, another seizure last night, definitely getting worse each time, not to mention more painful.

It’s slightly worrying when you go into A+E and as the paramedics wheel you down the corridor, you pass the Sister and she says, “Hello Liam, I’ll get you ‘your’ fan”. Then whilst laying there fitting, one of the Doctor’s that i’ve seen twice now, pops her head in and says “Hello again, we should get you your own bed, it’ll save you the hassle of keep coming back”.

6 hours earlier and I was sat at my computer writing a letter to the Professor at London to stress my concerns at how serious things are becoming, and how I’m struggling to manage both mentally and physically. Little did I know then that I would be heading back to A+E that night…

Below is the contents of the letter, which I have also sent to the Consultant at my local hospital, and my GP. I don’t suppose it’ll make any difference, but then if I sit here and do nothing I will have to wait 5 months before I get the tests, and i don’t think i can survive another 4-5months of this!

Letter as follows:

“Dear Professor Mathias,

Following my initial outpatients appointment with you on Tuesday 19th April 2011, my symptoms have become much more severe, to the point that I now see the urgency in informing you of my current situation.

My joints and muscles have become increasingly painful, to the point that it causes great pain to use them for simple tasks like walking or simply standing up from a seated position.

The tachycardia, which once only came on after standing, now happens regularly on minimal movement, or just by yawning even in a seated or laying position.

My head is by far the most worrying of all of these. It has grown to the point that I cannot escape the immense pressure that I now experience 24/7. I can only liken this to having a washing up bowl full of hot water upon your neck. The weight and heat of this water pushes against my temples, backs of my eyes and needs to be supported by my neck muscles. If you can then imagine turning your head left and right, or simply moving minimally, then the water, or more importantly, the weight of that water ‘sloshes’ about increasing the pressure within my head.

Most recently (within the last two weeks) this has caused me to enter a conscious seizure, which looks much like that of an epileptic fit. It starts with a loss of feeling in my arms and then a slight tingling in the top of the legs. Within minutes of this I get hotter and then my legs start to shake. Following this the muscles throughout my body agonizingly cramp and then contort and my body spasms with increased tachycardia.

The pain is unbearable, and the paramedics have taken me to A+E on every occasion; so far I have experienced three of these episodes within a fortnight (the first of which lasted for 4hrs on 06/05/11). However the latest of these (20/05/11) was by far the worst. I can honestly say that I have never felt so scared or frighteningly ill in all my life. The fitting was incredibly fast and painful, and I could physically feel my veins vibrating as the blood rushed around my body, with what felt like the speed and power of a pressure washer.

I am now housebound, desperately waiting to undergo these tests and begin some form of medication to control what is becoming very serious. I am of the mind that I will do anything not to sit and moan about how ill I am, but it has honestly got to the point that I cannot do anything, and that is no understatement. My limbs continually lose feeling, the pressure in my head affects my eyesight, so I cannot even do simple things like read a book or watch TV properly. There is quite simply nothing to take my mind off how ill I feel.

I am stressed, worried and to be frank, scared stiff that I could have another one of these agonizingly painful seizures at any moment. I can only hope that you read this and see the urgency in my state of mental and physical health. I have no idea how much worse this can get, or how much more my mind and body can bear.
Yours sincerely…”

Perhaps I should have written PS on the back… PS. make that 4 seizures, not three! The only thing that seems to be certain in my life at the moment, is that I will have another seizure, its just a case of when? I guess all I can do is hope it’s not today.

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