Thursday, 21 November 2013

Feeling Sentimental

Today is the 2 year anniversary of my lung haemorrhage. My lung haemorrhage was the point at which things started going wrong for me. You've heard the story. I was a dance student and then I couldn't do anything. It sounds like a Hollywood movie. I don't why I remember these dates when I can barely keep track of my friends' birthdays. I guess my brain is clinging to the moment it all went wrong. And when things go wrong as dramatically as a haemorrhage I guess it's normal to remember them. 

I'm not an expert but I do think traumas tend to be more mentally destructive than they are physically. It was such a horrible experience that it's odd now to look back on it because I know there was a time where I remembered every unpleasant detail and now there are only fragments of memories. It's not like I want to remember the horrible things, and my brain does tend to forget them, but I feel like I must remember it. Firstly because it reminds me how lucky I am to be alive and that's a feeling I want to cherish because it influences every choice I make in my life. A little awareness of your own mortality can be a good thing in very small quantities. I also feel like these memories, although not pleasant, are a part of me, part of who I am and I'd love to find a way of remembering them without having to think about them. I want to avoid that horrible period between tiredness and unconsciousness where your brain decides now is a good moment to think about all the silly things you've done and all the bad things that have happened to you. But I want to keep the memories because they're a big part of my life. I don't want to shut out bad things because they make me who I am and if I forget them then I haven't let them mold me.

I think there are advantages to not blocking out bad memories. It's strange that I remember so little of the operations I had throughout my childhood. Of even the pulmonary embolism I had when I was 16. The problem with memory is it's selective and usually worse at selecting things when you aren't sleeping. Everything was a blur even as I was experiencing it so now all I can see is fog and the things too awful to forget. I think if I could remember more of the relaxing time, the sitting around watching tv, the lovely nurses, it'd feel less like a trauma. 

I'd also like to remember these things because I am a writer and I'm very creative and I think it's the things that have happened to me that had made me like that. So apart from anything else these things make pretty good writing material. I would like to write an autobiography one day too and the fact that I can't remember much is a bit of an issue. 

I wouldn't change a thing about my life and I think my brain is going against me here by letting me forget the things that are important. But I can't complain. It's done a pretty good job at dealing with all the trauma that's been thrown at it over the years. If the only damage it's done is too my memory then that's pretty good going. 

But please brain, don't let me forget how lucky I am to be here. 

Tuesday, 12 November 2013


I'm sorry I haven't blogged in a while. My chest pain has been pretty constant and draining during the last few weeks and I haven't been up to doing much. When I have felt like writing I've had to get on with the four assignments I've got to submit in a months time for uni. They boasted for the first couple of weeks that they'd tried their hardest not to have all our assignments due in at once, but they've obviously failed quite miserably at that! I've been working on the 9,500 words of assignment and I've actually made pretty good headway at getting it done. I've finished one assignment, got the first draft done for another and started another, which I'm quite happy with because I don't need any more stress because that always makes chronic pain a lot harder to deal with. 

Today, I decided, to hell with it I'm going somewhere. After deciding not to go out all at for Halloween and firework night because they cold makes my chest exceptionally painful, I decided that the Christmas light switch on in Bath was something I should go to. And I'm so happy I did! My boyfriend and I had a nice lazy walk (I say walk in the loosest possible way as I was in my wheelchair but there's no word for that) around town, had a look in some shops and bought a warm hat to see me through the evening. Then we got into the warm and had coffee and a chat. Then braved the cold again for the main event. The light switch on, which this year starred Mary Berry along with a band and a gospel choir. Simply because we came at Milsom Street (where the event was) we ended up being allowed by security round the side of the stage without too much of a crowd and later the security even asked everyone to get out of the way so we could have a good view from behind the gates. We stood (again I'm using wrong word, I sat) by this really lovely woman who was also in a wheelchair and had the sweetest little 6 month old baby on her lap. We got a bit of press attention too, which I always find a bit odd as they wouldn't have looked twice at us if we weren't in wheelchairs but it's pretty cool still that I might end up with my picture in the local papers. 

The switch on show was really good, lots of Christmas songs to get everyone in the festive mood and then of course the highlight for everyone, Mary Berry! I love The Great British Bake Off and I love Mary Berry because she reminds me so much of my Gran. They were even both born in Bath and around the same age I think. My Gran is a massive fan of hers too. They're just both the sweetest women you can imagine. I think everyone would love to have Mary Berry as their grandmother. The best thing was that when she came down from the stage she walked towards us and started mingling with the crowd. Where we were was the only bit that wasn't fenced in so she was able to come right up to us and she shook my hand and asked me how I was and then my boyfriend asked if we could have a picture together and she said yes!!! I could barely contain how happy I was! My boyfriend managed to get a really good photo of us, which I will treasure for ever. It was just the prefect end to a lovely day. And I'm just so glad I decided to go out today because if I hadn't I wouldn't have had the lovely day I did. As it turned out my chest wasn't so bad in the cold, though you can see in the picture I'm pretty well wrapped up! But it was probably more to do with the excitement of seeing Mary Berry and having a lovely day that took my mind of the pain. It's hurting now as I lie in bed writing but I can have a swig of morphine now that I'm safely in bed and it doesn't matter if I fall asleep.

Before I start talking about what's happening with my chest pain, here is the photo: 

The press were also snapping like mad at this point so I might see this photo in one of the local papers too! 

I'll fill you in on what's happening with my chest, while I'm in the blogging mood. I went to the hospital to see my usual specialists but as usual they don't know anything. They seem pretty sure it's my pulmonary hypertension causing it but what the exact cause is remains a mystery. I always seem to be that person who just doesn't make sense at all! I go against pretty much everything ever written about heart disease and PH. To be honest I'm more concerned about pain relief and my palliative care doctor seems to have been a bit quiet for a while. Until this morning that is, when she suggested using a morphine patch. (As if I don't look enough of an addict as it is with my bag constantly full of syringes and tablets. It sure is going to look weird if I'm wearing what appears to be a nicotine patch and an oxygen cannula and I'm only 20 years old!) The liquid morphine isn't working out very well for me though. I took it at the beginning of the year for long periods and felt fine but this time I'm really feeling the drowsiness side effect, which is very frustrating. But the patch sounds like a good idea as it doesn't have the highs and lows of taking conventional forms of painkillers. Where you're in pain you take some, the pain is subdued and then the pain is back, which makes is the main reason it can become addictive and as pain management isn't as effective as slow release forms. (For anyone who is worried, my doctor told me it's virtually impossible to get addicted to morphine when you are using it for pain, it's when you take it when you have no pain that it effects a different part of the brain and it's then that addiction may be caused.) I don't know when this is going to happen but she said she wants to see me to discus other options so I'm not sure if these patches are going to get to me that fast. That is the most annoying thing about the healthcare system, everything takes a ridiculous amount of time. "Hello, I'm in constant pain here!", "so we'll see you in three weeks, okay?"

So I'm just waiting for things to be sorted at the moment but I'm getting out, which is good for my sanity, and I'm enjoying my uni work too. I'm feeling happy, which is the main thing. Just remember, life is for living, take every chance you have to go out there and let life give you the good stuff. Above all, learn to listen to your body, if it's telling you to rest, do it, if it's undecided, go out and have fun and see what it does to you. You don't know until you try, and maybe your body will give you a break. It did for me! 

Bath Christmas lights at Southgate shopping centre. 


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