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The good, the bad and the ugly truth

June 9, 2011

I almost feel that I shouldn’t write the following. So many people have offered me much needed support lately and I strangely feel that I shouldn’t be writing this setback… but the blog was always meant to be the truth and the good has to go with the bad – at some point I hope there will be a great deal more good to write about, but at the moment its all bad, and here’s the ugly truth…

After really suffering yesterday with the heat; I sat today with the blinds open and windows wide, badgering away in Photoshop on the computer while listening to the sound of the rain, ever so slightly relieving some of the pressure in my head. The cool breeze was almost thereputic as it passed through the gaps in the blind meeting the fan and speeding its way towards me like a sigh of relief – and relief it was, although very little in the great scheme of things.

Ive been in a dark place lately, really struggling to cope with the fact that im this ill yet have to wait for tests before i’ll get any kind of meds to help. Ive just not been myself, at times the anger builds to bursting point, yet although I know im being like it, it horrifies me that i cant stop or control it. I have never been an angry person, or someone that found things stressful, but im realising new things, and these are things I dont like at all.

This afternoon I had a call from Prof Mathias’ secretary in London. Despite the letters from my Consultants, the letter from me and the letter from my GP, I have now been told that I wont be getting the tests for another 8-10months……………..

Speechless, what do you say, what can you say. The only way I will apparently get in any sooner is if there is a cancellation – seriously? if everyone else is in the same situation as me then they’ll be living every day and breath waiting – so they’re not exactly going to cancel an appointment.

Yesterday I came across a group of what seem like great people, they’ve set up a channel on youtube and they all share their thoughts and experiences of suffering with pots. I hope that I do get a reply from my email and can in some way skype one of them for a chat, I just need to be honest with someone and what better than someone that knows what im dealing with, without me needing to explain myself. fingers crossed they send a reply.

Meanwhile, im going to try and get back and see my consultant to see if there is anything we can do in the meantime. I just need to manage and cope while waiting.

Sorry this isn’t more positive. I’ll keep you posted on how I get on over the next few days with the local hospital.

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2 Comments
  1. Adriana Marks permalink

    Hi Liam,
    I cannot imagine how frustrated and disappointed you and your family must be feeling. Fingers crossed for a cancellation!
    Adriana

  2. Ruthie permalink

    Hey Liam,

    I’ll be praying that you can get in much sooner than that. Keep being honest and open with the good, the bad and the downright unfair, ugly side of things too. Here for you always. Although these are dark times, something good will come of it although that is really hard to believe right now. Even if you are the inspiration on youtube for somebody else. You are definately an inspiration to me.

    Ruthie x

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