Monday 27 February 2012

Routine in my life. (Not my choice!)

Since my early days of work, I very quickly discovered that I was not a person who enjoyed routine. Apart from the fact that I had to go to work every day, that was as much routine as I required! That is why, after a few years of working for large organisations I decide the time was right to spread my wings and work for myself.

After nearly 30 years of life where I never new what the next day would bring, I am now enduring a life of fairly strict regime where I go from one appointment to the next and one round of treatment to the next. I mention this as I start my next round of photopheresis at St Thomas's today. To have the desired effect this has to take place on two consecutive days, every fortnight and my current programme is scheduled till August.

We have just had a fun w/end with an overload on sport, and a lovely lunch with family and friends. How lucky am I? I can't help asking myself why I am complaining!!

I have been really busy since the makeover show, trying to get rid of all of our unwanted stuff.I spent the last few weeks communicating with people about the show. Will be interesting once it is shown!  There is a charity event on the 26th March which I am organising, and a talk I will be doing in a couple of weeks. Plus of course Roz and I, working on the blog

So it is not as if I haven't got plenty to do, which is fun. It is just that when I got up this morning I realised that my life really was still routine, as I was back to hospital today!

I am now in the situation where I only accept projects that I am interested in and where I feel I can make a difference, but still I do not feel satisfied. If I put the lack of income aside, most people would like to be in my position. Go out for the day, meet friends, read a book or listen to music.

In the cold light of day, I should be really grateful for what I have. My prognosis was poor and certainly, if asked at the time, it would have been my ambition to get to where I am today. Enjoying times with friends and family, and less trips to hospital as an inpatient. Seeing my children get older and enjoy their lives and be there for them for any advice they need.

I often ask in my head will I ever be able to live a hospital free life?? Everyone is very positive as they would be, but my doubts linger on. I am now into my fifth year of almost continual treatment and I have got to the stage where it is difficult to remember my life with out the hospital. Ironic really, as I was never an inpatient till I had reached 50!!

I think the above is a MONDAY MORNING post!! But it is how I feel and this is what this blog is about.

How are you feeling today????  

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