Thursday 25 August 2011

The Perfect Storm....

First off; apologies for deserting my post all too often this year.

You all deserve so much better from me.

I am sorry.

I have had to try to face up to the reality of my life more and more recently. I can put it off no more; tomorrow I have to move back home and live with my Mum and my Brother.

I am devastated.

Who knew the past twelve years had just been purgatory. I now descend into hell....

For eternity?

I hope not.

I can no longer afford to live on my own on the Welfare Benefits the Government see fit to award me.

Simple as that. FACT.

The Government's desire to extinguish all hope and have me live in poverty in perpetuity is cruel. In another couple of years I will be useless to society, too far gone.

Only then will they be happy.

If they invested in me (short-term) rather than giving up on me (long-term) they would get excellent value for money. Instead the Government has become so short-sighted that they cannot see beyond the next Daily Mail (et al) headline depicting ALL Welfare Benefit claimants as some sort of human sub-species not fit to breathe the same air as the chattering middle classes!

However, if I was a single "mother" with a handful of children spawned by different "fathers" I would be loaded!

Go figure.

Irony.

My financial predicament combined with my chronic ill health is truly a vicious circle.

I do not have the strength to fight any more at the moment.

I am not well.

I need to ask for help but I am afraid that if I do it will fall short of what I need.

I need to be rescued.

I wish there was a rehabilitation retreat for those of us with fucked up thyroids who have reached the end of their tether.

I picture a simple place by the beach where it's a short drive into a small coastal town. And best of all there will be a Doctors Surgery containing the kind of doctors we all deserve.

Good company, great food, inspiring workshops, glorious music, writing, and books. Long long walks when I'm up to it. A place where winter is as beautiful as summer.

Dreamy.

Me? A romantic?

Why of course!

Perhaps I should set up a place like this.... it's an idea for when I get well.

I could run my operation for improved diagnosis and treatment of thyroid disease by "health professionals" from there.

I will give my life to taking on the big pharmaceuticals and changing government policies. My analytical and organisational skills will be best served in that direction.

Anyway, we already have "angels" who selflessly give their lives to patient advocacy. There are many advocates out there, but the one that fate would happen to lead me to was Mary J. Shomon, my very own "silver lining", who it is an honour to call my friend.

Don't I go on?!

Anyway, to be financially viable (grown up words!) it would have to be in the US. Would they have me? How will I get in?

Where is the most beautiful place to live, on the coast, in the US, where you get to experience all four seasons? North California (San Francisco)? Virginia? Long Island? Rhode Island? New Hampshire?

Build it and they will come....

I would love to "go away" to a place like this for as long as necessary to get the help and treatment I need....

"HypoMan, a man barely alive.
Ladies and gentlemen, we can rebuild him.
We have the technology.
We have the capability to build the world's first bionic man.
HypoMan will be that man.
Better than he was before.
Better.... stronger.... faster." - The Six Million Dollar Man.

That was the 1970's. Why six? What price now?

That's my dream anyway.

*slaps face.... hard*

Back to reality!

I hope, in time, I will be able to make progress. It is just that I am faced with a huge adjustment to make and I am not sure how it is going to pan out.

It will take time.

Will you give me time?

It will take patience.

I have the patience of a saint.

I need to provide my Doctor with a "dossier" to support my argument for a trial of Natural Dessicated Thyroid (NDT).

I have researched and located freely available evidence published on the Internet by the NHS that documents that the NHS issued 1,700 prescriptions for Armour in 2010. FACT.

I have many other documents bookmarked on my laptop.

I have no printer and my laptop is doing a better job than me of stringing out it's death throes. Worse still at my Mum's I will have NO access to the Internet. I do not have a fancy "smart" phone, as the name suggests; not at all suitable for me!

I do not expect to be prescribed Armour even when I provide my "dossier", and it is this pessimism that is preventing me from going to see my Doctor. Procrastination I think it's called, right Katie?

I detest confrontation. "Thyroid Me" is a coward and not assertive.

I am afraid what my response will be to yet another rejection in the face of compelling evidence.

I can't even begin to imagine what would happen if Armour did not work for me and I requested another brand of NDT.... or whisper it.... the subject of adrenal exhaustion/fatigue.

I am full of anger.

Am I going mad? As that is surely what the NHS would have me believe.

I am full of frustration.

I am lashing out at "society".... when will I learn.... it is unproductive and ultimately futile.

I am full of self-pity.... have you noticed?

Quite a catch!

Moving back home is going to be miserable. I love my Mum dearly, but me and my Brother do not get on.

Back to my small childhood home, a place where there is no escaping each other, and where it is what is not said that is deafening.

Like I say; welcome to hell!

Try to be positive....

I hope to be able to save enough money over the next few years to see a private Doctor and if need be pay for the necessary blood tests (Reverse T3) and medication (NDT).

Am I living in denial?

I cling to the hope that I can lead a "normal" life in the future. By that I mean a job, a relationship, children, a home, a social life, a holiday....

Is this unrealistic?

Am I asking too much?

How have I become brainwashed into desiring, no, lusting after, the consumerist dream outlined in the glossy magazines and every fucking advert you see?!

It will not make me happy!

So why am I finding it so hard to let go?

What is it that I fear?

So many questions, so little time already!

All I do know is that for the foreseeable future I'm going to be off the reservation. I will try to keep in touch. I just do not know how things are going to work out.

I am thinking of keeping a journal/diary.... just snippets of me.... if I achieve this I will try to type them up and post them when I can.

No promises.

It is now that I would like to thank you all from the bottom of my heart for being here for me (and if there is a philanthropist amongst you don't be shy *winks*). You are all my comfort blanket, whether you read this blog, follow me on twitter or facebook, I am indeed a rich man to have you all in my life. I will never forget. Thank you for sharing in my story. I have kept, and treasure, all your comments. You have taught me so much. Thank you.

Don't hold back, feel the love.

"I am just going outside and may be some time" - Oates to Scott.

Wish me luck.

Remember, for as long as we have hope we have a chance.

2 comments:

  1. Woah, I'm not entirely sure what to say, unfortunately I'm not suprised because I know the hell that is thyroid, but, at the same time, I really, really, really feel for you Robert. Not entirely sure if I wanna admit this or not but resding your post made me cry!

    Moving back home must have been such a tough decision to make, especially when you and your brother don't see eye to eye (trust me, I know that feeling too - except I have a sister!).

    Your idea of a retreat sounds amazing; I would totally join you...well, if it existed and if I wasn't all the way over here. But seriously, WHEN you get well, you should start one up. And WHEN I fullfill my dream of visiting England I'll help you. I'll use my marketing skills to get your retreat; and thyroid problems into the public eye!! We'll be invinsible!!

    But for now, of course we'll give you time. It does take time and feel free to take all the time you need. I think it's safe for me to say Team Thyroid will be 100% behind you the whole way. When you need us, we'll be here, and when you need time to be quiet and do some soul searching and spend time alone...we get that too!

    You WILL one day lead a normal life, you will work, you will have a family and you'll be able to go on all the holiday's you want!! It's like writing a song; incomplete the song may seem like a messy, ugly combination of noises...but once it's finished, it becomes this perfect piece of music. We just need to wait until our ugly, messy songs are complete...then, we will be as close to perfection as humanly possible!!

    I think I've written enough now...I'll shut up!!

    ReplyDelete
  2. Hi, long time no see. Did you see Mary's post on FB re Vitamin D? Thought it might interest you. http://thyroid.about.com/b/2010/09/30/vitamin-d-important-thyroid.htm
    Take care
    Aly

    ReplyDelete

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Thank you, Robert.