The Chosen Few.

It has been nearly two months since the penny dropped and nothing has changed! Life goes on as they say. I have taken the first steps in facing NF. Like my doctor asked I bought my self a blood pressure monitor from Amazon to monitor my blood pressure for a week, morning and night. I did this before my trip to Finland to see friends and found that according to the blood pressure web site I have pre high to high blood pressure. A typical side effect of NF? Is the reason why I find it so hard to sleep? My Finland trip was going to be another step towards facing the rogue gene. Little did I know it would be easier than I thought and little did I know the dry cold air of the country would lend a hand!

I knew that. I would have to tell my friends in Finland about NF because 1. They are good friends of mine whom I deeply care about and 2. The sauna culture thing! In Finland it is a given that when you have people stay you invite them to share a sauna. It is a way of honouring your guests and a guest who has come all the way from England would receive such honour! I have been several times before and had many saunas there but not since accepting my condition. Not once before have my friends asked about the bumps on my skin when I have been in the sauna with them. I put this down to the Finnish reserve which is more amplified than the great British one. Note the deliberate omission of a capital G there! I decided that I would bring the subject up before going in the sauna. Never before have I felt so self-conscious about my NF as now. After my arrival and first nights sleep I woke up to find that, as previously mentioned, the dry cold air that morning would pre-empty my plan to address the subject that evening. I got out of bed and just gave the smallest of sniffs and it was like the eruption of Mount Etna. My nose started to bleed continuously and I only just managed to get to the bathroom sink before I left a trail of plasmic destruction all over the floor! As I sat hunched over the sink it was decided that I would have to go to see a doctor. Although Finns are shy and reserved they are very competent and organised. That's why the trains and buses can run on time during the winter with ten foot snow drifts everywhere! So an appointment was made and we jumped into the car for a half hour drive to the nearest ear, nose and throat specialist! My dear wife at this time was taking advantage of the warmth of her bed and was still asleep!

It was during the drive that I explained NF. After all the doctor was going to ask about any medical conditions before fixing me up and my friends were going to have to translate! Although I can speak a bit of Finnish I don't think my vocab is quite up to the standard of detailed medicine! So in the car I explained it all and assured them that I was going to tell the husband about it that evening before sauna. I will never forget the response. The husband told me that he had noticed the bumps before and it had really concerned him what it might be but never wanted to ask as these things are private and that I would share them if I wanted to when the time was right. They both then told me how honoured they felt that I would confide something so personal and private. Neither had heard of NF and proceeded to find out as much as they could about it. The husband said that he would help me explain everything to his father in law that evening as we shared the sauna. The father in law also has a genetic condition that causes headaches and we did speak at length about it later. I now know the word for Neurofibromatosis in Finnish. Just take the S off the end! Anyway, the doctor explained that the change of climate from English weather to Finnish weather had caused a blood vessel to pop and he cauterised it with silver-nitrate to stop it happening again!

I have found that Finland is wonderful for my health. I sleep better, I feel better. The sauna seems to lower the blood pressure. The fact that there is so much space to breathe has done the world of good. I wish I could live there!

When we got back home to England I decided that would explain NF to another old friend whom I have known for years. I used the story of the nose bleed to bring the subject up. The reaction I got was another surprising one. "I thought the lumps on your skin were an allergic reaction to your working environment!" I did wonder why she never asked about it before if she had already noticed it despite the fact I am always wearing long sleeves. Even close friends don't want to come across as nosey parkers when that really isn't the case. I don't mind telling people who are genuine although It is the hardest thing to explain to people. Well it is to fellow Brits! Finns seem to take it in their stride even though they are a more reserved nation, if that's possible. We are all uncomfortable with life and health issues. Think of how we deal with death! We use expressions such as, "They have passed away.", or we disguise the subject with comedy, such as using the phrase, "Kicked the bucket!", which really is a truly awful expression given its actual origin! Yet, we find it easy to speak to our doctor and explain everything even though they are generally complete strangers most of the time. I say this because I very rarely go to the doctor, which is why I was told off for leaving it so song!

When I returned from my initial visit after "The Penny Drops!", I made an appointment and turned up to the same doctor and handed in my Blood Pressure readings done during a specific week. Although my readings were quite high she didn't seem too phased and I was just told to keep my eye on it. I then had my back checked and was told a yearly check would suffice due to the mild expressivity of My NF. I am grateful that it is mild but I will keep this in check as I go along. I am fascinated by the social implications of NF. I don't want to go public but I don't want to go secret. I will find the balance!