Monthly Archives: April 2012

Bad Friend

One of the biggest worries I have had since starting this blog was letting my friends read it, there are things that I have written and will write that they know nothing about and in all honestly I am fairly scared about their reactions if and when they read them.

I have an amazing group of friends and I would jump in front of car for any of them, well most of them, some of them might need some a bit of knocked into them. The way I see it, it is not a reflection of them or our friendship that they don’t know things about me that I have hidden from everybody apart from the other people who live in my head. (Just in case you wondered I only have one voice in my head.)

But, this whole experience has made me very insular, I am an extremely social person and love to “work a room” but beyond being friendly I keep my cards very close to my chest as to what is really happening in my head. I prensent a bravado that really isn’t me, I imagine it is a protection mechanism, for me and for my friends; I don’t want them to associate me with anything to do with my illness. I just want them to be friends with ‘me’, the one that a lot of them knew before my illness, but I guess I am starting to learn that this is a part of me and for them to know who I am it is important that I don’t bricked them out of a part of my life.

I would definitely say I have lived behind a facade for probably the full 10 or so years, which is pretty scary to realise. I have been to and still go to pretty dark places in my head. My dark place and I get on pretty well these days, I try to give it a few hours at a time convenient to me every week, and as a result I rarely get dragged into a slump as frequently as I use to. I have always been able to paint a rose picture for observers but I have never taken time to stop and think if people are recognising my strange depressive behaviour and let me get on with it or just let me get on with it.

My head has been fully loopy ever since my diagnosis but it got worse when I realised that I was going loopy and not talking to anyone. You become more insular as you come to terms with just how cuckoo you have become, well I did anyway.

Oh and yeah and …………… I have heard the one about the dark space in your head being because something is missing.


Operations, more operations

After my second operation I was given time to heal, I had a year away from the table to allow hooks and clips to dissolve and to let my face reattached to my skull, before it got ripped off again.

So …..March 2007 was the date of my 3rd operation and this time it would be both the previous operations in one go, it surprisingly only took 8 hrs and again I was home within 48 hours of having my face sewn, glued and stapled back together, no mean feat. This time I was sent home with drains in again, these are particularly horrible contraptions, a tube comes from the bottom of the incision out to a deflated pump balloon which fills up with blood and fluid until the wound has healed. I was making frequent trips back to the dressings nurse again but this was  due to the number of incisions and not an infection so I wasn’t that bothered. The stitches around my ears were the first to come out and then after another two and a half weeks out came the staples. Now this is when you think I am a real freak. Having staples removed is one of the strangest pleasure/pain sensation I have ever experienced. The area is still reasonably numb, and some of the stables are scabbed over and can be hard to remove but all in all the sensation as the staple is pull from your wound is kinda nice. There I said it, don’t look at me differently now.

After this operation I again put everything on hold to let my face recover and thought I should probably finish my degree without any interruptions, so any more operations could wait.

Time to get in the DeLorean, we are heading to 2009. (if you don’t understand this reference, please stop reading – only joking, but seriously Marty McFly is the bees knees)

I have finished University and decided this would be a good time to have my next operation ahead of joining the voyage on a ship by the name “Career”. I saw my Surgeon in August, I was on the list, but he was busy at the time and would get me in as soon as possible. I was given a date in September for a pre-operative assessment, which went wonderfully. Then the wait, a long wait.

Throughout December and January I was trying to contact the NHS to find out if I had a date for my surgery yet. I didn’t hear back and by the time February had arrived I was more than concerned that I was putting my life on hold for something that was not even scheduled. By March, I resorted to making a private appointment with my surgeon to discuss if that route would speed things up. Low and behold my surgery was actually scheduled with the NHS 6 days after my private appointment, I just wasn’t told. To rub salt in the wound, I was meant to be on holiday.

My surgeon kindly said that I should go on holiday and he would sort it all out for me to have the surgery in April. He was an absolute superstar creating space for me after the administration of Chelsea and Westminster had royally fudged up. My surgeon has always tried to make my surgeries as convenient as possible for me, for my first 3 operations we got our diaries out and scheduled them around my university holiday and his kids’ school holidays.

So April came and it was time for my 4th operation. This time I was having the scars around my ears removed and a bit of a tweak around my eyes. The surgery was a lighteningly quick 4 hours and after another breezy 48 hours on the ward I was being driven across London to nestle on a sofa for a few weeks.

As with previous surgeries I had to sleep upright again with my 3rd and 4th. This is one of the hardest parts of the whole experience, you don’t feel as though you are recovering properly when you can’t have a bit of quality shut eye. My recover took about 4 weeks this time with the stitches coming out after 2. I think my head is getting used to inflating to the size of Hey Arnold’s.

Well that is all of my surgeries covered now, but fear not, I am awaiting a date for my next and we have all the joys of the investigations and more presentations.