Let's Start Again

    Friday I took another two steps confronting NF1! These are steps I already took 22 years ago but it still seems like I am taking them for the first time. Only this time I know the answer. It feels a bit like watching a film you have seen many years ago where you know the basic story but you just can't remember the exact storyline.

   Friday morning after spending another sleepless night, this time unable to dispel the boredom or hunger by snacking in the night because I had to go for a blood test, I went to my local hospital. Found the Pathology Department and learned something new. The medical complicated term for a blood test is a phlebotomy! After arriving at the front reception desk I was told to just grab a ticket and wait my turn by a nurse who was obviously fed up of telling patients the simple procedure. Forgive me for not being a seasoned visitor to the Out Patients department. Why on earth would I think that the Phlebotomy department is exactly the same as the cold meat counter at Sainsburys? So I took my ticket, number 14, and sat down and prepared for a long wait as the next turn was only number 6! What I didn't expect was how fast this particular queue was actually moving! The numbers seemed to ring up faster than the last 5 seconds of an eBay auction! Wish the cold meat counter was that fast! What I didn't realise was that there were about six little booths to go in and the turnover was pretty quick. A friendly Irish nurse was in charge of my phlebotomy (how I love that new word) and could tell I had a good bout of high blood pressure just by how easy the needle went in. It was all over in a matter of seconds, and the labels my GP had given me were fixed on to 3 little sample bottles of my blood each containing the defective gene on chromosome 17 yet each would be tested for different levels of different things. All I know is one was to do with glucose, another to do with kidneys (renal) and the other for something that has a 3 letter acronym. L might have been one of the letters. I must start to pay attention more! This procedure I found a bit disconcerting and pointless. Pointless because I know what is wrong and disconcerting because when they look at my symptoms such as poor functioning kidneys or something they will treat the symptoms rather than the cause! They always do. It's like teachers and parents demonising Facebook because it is being used to bully and gossip etc when really they should deal with why it's being used for that purpose and deal with the source of the problem! Anyway, I'll just wait and see.

The other step I took was confronting the task of telling friends that I was as healthy as I might look. To be honest I don't look amazingly healthy, as I have rings under my eyes which is a sign of kidney problems possibly due to NF1, but I don't look unhealthy either. Occasionally, someone may might have asked what's that rash on your arm when I have worn short sleeves on very rare occasions. I have always responded with the, "Oh, it's nothing really, just some genetic thing I have always had!", type response. What a cop out really! So how was I going to tell friends that I have known, some more than 20 years, that I have a rare genetic disorder and it has never come up in conversation before? On one occasion, I was watching one of those daytime TV programmes and they interviewed someone with NF and I didn't even take the opportunity. That was during the denial stage. I did tell a friend once when she explained that her teenage son's learning disabilities were due to neurofibromatosis that I had the same thing. It was more of a, "Small world, by the way.", response and she looked at me very bewildered and I am not sure she really believed me. It was if I had mistaken what she had told me. Her sons NF is quite bad by the way. I don't know why I blurted that out really. Was it because I felt a bit of relief that I wasn't the only case I knew of?

So after my phlebotomy (managed to get that in one more time!) my wife picked me up with a close friend of ours in tow to go for a coffee and a bit of lunch. She was the ideal first person to tell. I've known her longer than my wife and she moved abroad before I got married but moved back to area a few years ago and when my wife and her met they hit it off really well and have been close friends since. She is also an aromatherapist and is quite sympathetic to all sorts of ailments and problems people experience. So at coffee, we explained the whole story of denial and exactly what NF really is without too much fuss. I am so glad she was the first in my circle of friends to know. Sometimes all you need is genuine empathy and you feel a whole lot better! Since then I am less concerned about having the lumps removed and more concerned with looking after myself better. NF is more than the lumps on your back, it's has other issues which are just as important in this image obsessed world we live in. When you truly know that people love you for the person you are inside you can be content with yourself. However, I will not tell everyone I know about my NF, I still believe it is something personal and I still don't want to make a big thing out of it. Why the blog then? For one thing it helps me to write about it and it may help others who stumble across this site and have the same issues. The great thing about the net is that it is both private and public at the same time! There is a good website called inspire.com where people with NF can share, advise and empathise without feeling exposed to the whole world. It was once said that you can be in a crowded room and still feel alone. With the Internet you may be alone but you don't have to feel that way. You can separate your everyday life from your NF life, but you must have both in order to live your life.