Wednesday, 23 May 2012

Is it normal?

Whilst I've been in hospital I've seen quite a lot of TV, and some of it has made me think a lot about normality, and my life

I was watching House, and Cameron said "It's normal to want to be normal", which House disagreed with, I can't remember what he said exactly, because my mind had wandered off, thinking of what this meant to me.

On the occasional day when I'm in a lot of pain, sleep deprived, throwing up non stop etc... I wonder what it would be like to not have these things happening, but that's only very occasionally.  In all honesty, I don't want to be normal, I don't think I've ever been normal, and this usually surprises most people, I'm happier like this than I was before. I have friends who accept me for who I am and love me.  I just have to look around my room, where my locker is covered with cards from friends and all the messages they send.  I never had this as a child, I didn't have friends until I went to uni, which was full of weirdos, so I fitted in just fine, but it really wasn't until my health deteriorated and I had to look on-line to maintain friendships, that I made my breakthrough. Here I found people who were happy to welcome me in to their lives, and even though some of them I've never met, we know each other very well.  I don't think I would have found this level of friendship had my health not become a bit wonky.

I'm also happy, something I definitely wasn't as a child. I never fitted in at school, I was bullied daily, I was miserable, I didn't want to face the prospect of a whole life like that. A life like that for me, is a much scarier prospect than the life I have now.

I also know what I want to do with my life, something I certainly didn't know when I was much younger.

Consequently and I think this is why I can't be angry about my situation, my life on so many levels is better now.

There was another phrase that grabbed me, which is part of a theme tune "I don't wanna be anything other than me." This I whole heartedly agree with. Even as a child, although I may not have realised it, I never changed to fit in with my peers.  I guess though for me, I didn't like many of my peers, and so I didn't want to be involved with them anyway.

I'm proud to be me, I stand up for myself (not literally!!), and I refuse to conform to what society thinks I should be like.

Finally whilst watching Great Ormond Street Hospital last night, one of the parents said that "we all want our children to be perfect.... we just have to redefine what perfect is."
This intrigued me.  I can kind of understand what he was trying to say, and I guess it is part of unconditional love and wanting the best for your own child. I can't imagine how hard it is to watch on as your child (whatever their age), spends months in hospital, has operations, etc... In many ways I think it's probably easier to be the one living it.  I know my parents are much more stressed about my health than I am. I just put my head down and get on with living it to the best of my ability.  Making the best of the windows of health, not worrying about when it might get taken away from me again.

Back to the quote, however, I don't quite understand how you redefine perfect, I guess they were in the early stages of leading a different life, it doesn't mean that the new life, is any worse than the one they had planned in their head for their child, just a different one, that may bring in some amazing experiences that they wouldn't have had otherwise.

I don't think given another opportunity I would have lived my life differently. I'm happy, loved, and enjoy my life, which is more than many "normal" people can say, so you can go and shove your normal, I don't want to be it. I want to be and will continue to be ME!!

Sunday, 20 May 2012

When your normal changes

Apologies for the absence, this post follows on from "Here we go again".  The PEJ was no better than the surgical jejunostomy, but the consultant on the ward wasn't particularly helpful and discharged me on the Friday, I saw my own consultant on Tuesday and he decided I needed admitting to get this sorted.

I finally got a bed on Wednesday night, and have started TPN. TPN is Total Parenteral Nutrition, which basically means that I am fed directly into the vein, avoiding my digestive tract completely.  This is a big step as it comes with many complications such as line infections, liver failure, blood clots. About Parenteral Nutrition.

I start my training on how to administer my treatment myself on Monday. As I had trouble with infections around my jejunostomy, I'm very conscious about the greater risk of infections with a central line, so I want to be administering it myself as soon as possible. The less people that touch the line, the less chance of infection. I've been told it's best to do it myself as the skin flora is common to you already so it reduces chance of infection.  I met up with some people from PINNT yesterday, which was fantastic timing so I could discuss with them the pros and cons of a Port v a Hickman line. The main appeal of a Port to me is that I can go swimming, which would be fantastic as I miss swimming greatly and it would be great for cardio training- you may gather that I have a one track mind, most things revolve around my ability to row and train!! I know some people swim with a Hickman, but again given the problems I have with my Jejunostomy and infections I think it would be riskier to have a Hickman.  It's also not going to get in the way when I'm doing exercise etc.. I know some people who manage it with their Hickmans, but I'm going to give a Port a go as I think it'll suit my slightly bizarre lifestyle better!!

I'm hoping to get my Port fitted on Tuesday. We have a fantastic unit here, the Vascular Access Unit, which primarily puts in various lines for all sorts of medical conditions. The sooner I get my Port the sooner I can get home :)  I've set a deadline of the end of the month as I have to go away the first weekend of June.  I've already been told that I'm mad going away so soon after getting out of hospital with a new way of life, although in many ways it's very similar.

My main concern is how I'm going to get my medication as pretty much everything goes through my tube, so my team need to do some thinking about how they're going to get around that.  Although I'm looking at the benefits. I was on jejunal feeds for 24 hours a day, and will be halving that, which would be nice.

So, my normal has changed again, which is kind of what's normal for me. 

Tuesday, 1 May 2012

Reality versus Perception

This post is part of Blogging Against Disablism Day 2012.

I want to talk about perception versus reality.  I, and those who are close to me, have a completely different perception of my life, than those I meet in the street, or those that meet me in hospital.

Medically, I'm not exactly in prime condition; I'm artificially fed, wheelchair bound, have a heck of a drug regime and a list of medical conditions that makes most flinch.  That's what the medics see, and the people who only briefly come into my life, but it's just one part of my life, a small price I pay for generally a wonderful life.

Now I think I'm fantastically lucky, away from hospital and all the medical appointments, I think I live a rather fulfilling life.  I'm a student, I've been doing a Masters degree, since 2008 (unfortunately not finished due to several extensions thanks to my health, but it WILL get finished), I'm a volunteer doing a variety of different placements- many in the health care setting, to help with future plans, and I'm also a rower.  I want to take this as far as I can.  It's going to be a challenge, but I'm up for it.  I'm at the gym 3/4 times a week doing Pilates, Yoga, weights and cardio to become the athlete I dream of being.  The first artificially fed Paralympian perhaps; I did Google it and I couldn't see anything about former Paralympians and artificial feeding, but I may be wrong.

I was asked by a Registrar today if he could bring in some medical students to do abdominal exams on me, and as I was chatting to him, he was quite surprised to find out about the person behind the body lying in the bed (unfortunately, I'm in hospital at the moment).  It's rare that a doctor, unless they are in your life regularly, gets to learn about your hopes, dreams and aspirations, and that's only if you're willing to raise them and see what can be done to make them happen, because let's face it, often health is the thing that makes many of them difficult to achieve.

Perception is very objective though. I was at an outpatient appointment carrying my gutter frame after yet another failed attempt to get me safely standing, I was queueing to get my parking refunded, oh, I also drive a "VW Caddy, I-can, Drive from" which is adapted with Paravan Space Drive hand controls, anyway back to the point of this.  Two volunteers approached me and as I was chatting to them, I mentioned how lucky I am with all the things I can do, and they told me they didn't think I was lucky.  I was actually quite offended by this.  Surely whether one is lucky or not is in the mind of the beholder, and not something someone else can judge.  Just because I don't fill their perception of "normal", therefore I can't be "lucky" is sadly a reflection of the wider society.  This attitude is just one that needs to be challenged.  It is something I come across regularly, and it just seems to widen the gulf between those with significant health impairments and those without (or whatever terms you choose to insert there, but you get the idea).  All I can hope is that those who come in to contact with me, go away and challenge their own thoughts about these things.  Now I know that won't happen in most cases, and in reality may never happen, but I can live in hope (or is it delusion?!)

Being disabled, although I am reluctant to use that word, as it's not something I readily ascribe to, it's somewhere at the bottom of the list of things I would describe myself as, isn't all there is to me.  It's just one part of me, that most people can't look beyond.  My response to the attitude is that if they can't see me for the hyper active, slightly eccentric, up for a challenge, weirdo that I am, then I don't want them in my life, it's as simple as that.

Philosophically, I view my wheels etc... as a filter for finding new relationships, not just of the sexual nature, but for friendships as well.  If someone can't handle that part of my life, how will they ever manage to deal with the rest of me, which is much harder work to keep up with?!

Life is a challenge for us all, disabled or not, it's just that people can see the challenges they assume (incorrectly, of course), are the biggest ones for me.