To the ends of the Earth..



Still going strong....

So its been quite a while since last I wrote anything and that hasn't been because I haven't wanted too, its been because I am dead tired by the weekend after a week of work.

In August this year, more out of a whim than anything else, I decided to talk to a large (and very prestigious) national arts company here in Wellington and see if they would take pity on poh' little me, my being disabled and all that, and to my shock and horror, they offered me a real job. The first 'real' one in 4 years.
The job entails me running the volunteers for the organisation (the "Friends") and maintaining and developing the philanthropy that is part and parcel of a 1000+ membership database. I am kept very busy administering the organisation and attending to the various - and many - vagaries that come with the position.

Having MS was the real kicker. It is like a shadow hanging over my every move. Although I have become very adept at its management and can tell when something is going to happen before it does. I did not eat or drink anything for a few weeks after starting the job as the fear that goes with what might happen if I did was overpowering, but now, so many weeks later I am able to eat every day (a few muesli bars or an apple) and drink at least a litre of water daily. All this and I can make it to the toilet in time.....
I work 4 days a week in an office in the Marketing dept of the organisation surrounded by 8 other people (7 women and a guy) who are very supportive and I utterly love this job. Not only do I earn an actual 'real' salary but I am actually thinking again and able to use my many years of experience in the performing arts sector to successfully prosecute the position. It means more to me than they will ever actually know and my gratitude for having this position only serves to inspire me to want to achieve more and better options and outcomes for them.

It hasn't been without its ups and downs and very quickly they realised that I have other talents apart from those that set me up for the position and so I have been central in designing and instigating change-management for the company in relation to the organisation that I run. I am very happy that I managed all the quite VERY great stress that came with the various changes while coping with MS as well.
I stagger about on my walker and have only fallen once which provoked 2 people to rush to my aid but I recovered from that embarrassment and  I will not ever be that uncautious again....

MS has stolen so very much from me. It is the quiet thief that sits at your shoulder without saying a single word yet it slowly takes your very life from you.
Well, not from me.
I will go down fighting. I will and DO not accept that MS will steal any more of my life. I have tried Biotin and I see that it may have some benefit although the main result at present was that I peed like a horse... so, I will give this another go in December when I have statutory leave.

I am in a position at present where I have some influence over the companies interaction with previously 'disadvantaged' people and I use that to the best of my ability. I will effect whatever interaction I can with people who are likewise disabled or disadvantaged.

I work for the Royal New Zealand Ballet Company and I am very very proud of that. I hold my head up high every day I go to work and long may that continue. All of you who battle daily with this damn disease must know, I go out to bat for you ALL every day!

All the best

Tony K

https://www.facebook.com/friendsRNZB/

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