Bravery

I never know quite what to say when people say "oh you're so brave!" It usually follows something like "I couldn't have done that" or "well done for getting through it." What does that mean? Congratulations, you have not spontaneously combusted from fear during your experience. Surely that's the minimum requirement for getting through surgery - that you get through it. Time passes, no matter how much distress you're in and from my point of view all I did was let time pass. 

I know I'm not alone here. Most people with chronic illnesses or people who have gone through a huge trauma feel confused by the term. It can tend to feel like people have set a standard of emotional wellbeing that you then have to try to maintain. You can't cry all over someone when they've just told you how brave you are. Like most people in my position, I don't feel brave. This is normal for me, and I don't have a choice. If you're a fireman and you find that the stress of the job is too much, you can quit. But I can't choose to stop being ill. Sure, I can punch my surgeon in the face and walk out and refuse to come back but I will either bleed to death if he's already started or once my pacemaker stops working, die from heart failure. So really, I don't have a choice. In the moment, it really does feel like you're just existing so I don't see why a phrase like "you got through it" is supposed to be a compliment. You don't die just because something is awful. 

Okay so I probably sound like I'm being grumpy and not appreciating a simple word of kindness but not at all. I understand that people are being kind and I feel like my whole thought process on this subject has helped me to feel less awkward and confused when someone says "you're so brave". The thing is, that's not actually what they're saying. They're not trying to evaluate how well you've coped with the trauma. What they're really saying is that they understand and empathise with the awfulness of what you've been through and they want to assure you that you're doing well and even if you're not, that's okay because actually that experience was really awful. 

So my conclusion is this. To well wishers, be aware that people who've suffered a trauma may feel a sense of pressure to be mentally okay when you tell them that they're brave. It can feel like you're setting a standard or trying to avoid any situation where they're telling you how upset they are. But to those who've been through a trauma, try not to over think this. They're trying to be nice. They're trying to let you know that you're doing well and that they understand the awfulness of what you've been through. And understanding and empathy is something you always need, however much you might hate to be pitied, don't block people out. Of course they're concerned and they want to feel like they're helping a little bit. Try to think of it as a small act of empathy and you'll feel a lot more comfortable with being called brave. 

I'm not one of those people who hate to be pitied. Because I don't hear pity, I hear empathy and empathy is one of the best things about being human. Take it as a small piece of kindness. Don't let illness or trauma turn you into someone who gets offended by every little bit of kindness someone tries to show you. No, they don't understand what it's like to be you, but they're trying and that means everything. 

Lots of Thoughts

I had a Papworth appointment last week that went so smoothly and so quickly that I completely forgot to make a post about it. The traffic was pretty bad that day so we were in the car for about eight hours all in all and to be honest I think it was a bit much for me. I was really exhausted and we decided next time we'll probably have to stay overnight. I'm currently getting Employment and Support Allowance, which is really helpful for stuff like that because petrol and hotels and meals add up to quite a lot.

The appointment only took about an hour. I had a blood test to check that there's no changes in my blood that could affect the transplant and only waited half an hour to see the doctor. He was really happy with how I'm doing, so much so that I don't have to go up to see them again for three months instead of the six-weekly appointments we were having before. They said I should go and enjoy my summer and they can always see me early if there are any changes. They're still a bit concerned about my weight but I told them that I'd started to put some pounds on and am eating much better so I think they were satisfied. My doctor was really positive about my line. It seems he really wanted me to have it and thinks I'll really benefit from it. So fingers crossed! 

I've been feeling a lot calmer about the transplant recently. I feel like I can think about it more without feeling scared. I have these moments of blind panic where it's like I suddenly realise how huge this all is. It's like my life is a book that you'd read thinking, there's no way this would all happen to one person. I mean, I have heart failure and my lungs are under pressures of over 100, that's big! I'm on the transplant list. And eventually I'm going to be that person who had a heart and lung transplant. That scares me a bit. It just doesn't seem real. It's too scary to think about. I probably think more about things I can do after my transplant than I worry about the thing itself. I think that's probably good for me. Watching Glastonbury made me think about how that might be something fun to do after my transplant. Looking back at my freshers photos at uni made me excited to be able to go out and have fun again. If I can get uni to let me do freshers again, even though I'll be restarting as a second year, that would be brilliant. I won't be able to drink but I catch energy from other people so if everyone else is bouncing around that'll get me pumped up for a good party! I'm getting excited now just thinking about it. I stop myself sometimes because I don't want to get too excited incase it doesn't work out as well as I'm hoping. I think it's important to be positive but I don't want to be delusional because if things don't go right it'll make it that much harder to deal with. I think I'm doing okay mentally but I do have an appointment with some kind of mental health person at palliative care soon, which might turn out to be helpful. To be honest as long as I'm not feeling any anxiety and I'm sleeping well I'm happy but it'll probably be useful to have someone on hand if I do start freaking out. 

I've got plenty to enjoy at the moment though. I'm doing really well. I feel really tired but I feel good in myself at the same time, if that makes sense. I'm more keen to go out and do things but I don't have any more energy to do said things. I still like to do them because I sleep better if I'm more worn out. Otherwise I end up waking up at 3.00am and not getting back to sleep for hours. As long as I have one thing a week that I can look forward to, I'm happy. Even if it's just a nice pub meal out, a shopping trip or a visit to my Grans, or even something little like a parcel delivery and a trip to Sainsbury's. This weekend we're going to have a Fourth of July BBQ with my grandparents so that's what I'm looking forward to that now. My boyfriend was here this week, which was really nice. We went to the cinema to watch 22 Jump Street, which was really funny and had a nice meal at Zizzi's as well as some good chill out time. He'll be down again soon too so that's another thing to look forward to. I've actually done a lot more this week than usual. I did pay for it with a really tired out day but it's refreshing to be tired out for a good reason rather than after weeks of constant rest! 

I hope you all have a lovely weekend and I'll be back for a hopefully less deep chat soon! 

Living on the List

This has turned out to be the hardest post I've ever had to write. Which makes absolutely no sense whatsoever because I'm really happy at the moment. I think the problem is that I usually write down my thoughts but to be honest I don't really have any. The only times I really think about the transplant is when I'm having a bad day and just can't wait to feel better. I think I'm in a really good place at the moment because I'm ill enough that I really want that call to come but I'm level headed enough to not spend my nights tossing and turning, wishing and hoping. I know the call will come it's just a matter of waiting and keeping myself well enough for surgery.

So in view of the fact that I don't really have many feelings towards my transplant, other than a strange sense of calm, I've decided to write this post about what it's like being me at the moment. If I had taken the time to imagine what it might be like at this stage of my illness I probably would have imagined myself a lot sicker than I actually feel. Considering what's going on inside my body and how badly my heart and lungs are failing, day to day I feel okay (until I try and walk anywhere that is). Though it varies considerably. It's definitely a case of good days and bad days. It's mostly good but the bad days are really horrific and I do get quite down on those days. Everything just seems to get worse all on the same day and of course tiredness always makes everything harder to deal with so when I'm more tired I generally feel really rubbish. On bad days it's a case of trying to while away the day as fast as possible so I can get to bed and hope for a good day the next day. But the good days are okay. I can go out in my wheelchair, enjoy a bit of food, have a laugh and feel quite happy about everything. 

My main symptoms are tiredness, sickness, palpitations, painful swelling in the tummy and a lot of phlegm. But on a good day nothing is too much bother. The breathlessness however is horrible whatever day it is and I avoid it as much as possible because it feels so horrible, it can't possibly be doing my body much good. And I really hope to avoid an exploded lung or god knows whatever else could happen as my whole body feels like it's ready to throw the towel in. At the moment I can't walk much more than 5 steps without feeling out of breath and I physically couldn't do much more than 10 steps but that varies a lot too. My tummy pain has been under control up till now but it's been getting very painful recently, to the point where I can't sit still. I'm waiting for my water tablets to start making a difference because at the moment they don't seem to be doing much. I'm loosing weight like crazy too, which means my body shape is looking abit weird at the moment as I'm skinny as anything but my stomach and lower back is swollen so I'm looking slightly pregnant at the moment but hopefully everything will go back to normal after the transplant. 

In other news I'm off to get my central line fitted in two and a half weeks. It'll take months for the actual medication to start making a difference so I want to get the ball rolling as soon as possible. I'm not too worried about it as it's not under general anesthetic or anything so it's quite simple and then I have to learn how to mix the medication and hook everything up, keeping everything clean and stuff like that so that'll be quite interesting. 

Other than all that nothing much is happening. I've been out for the odd outing to stop me going crazy from being inside all the time. I've had lots of visitors, which has been nice. I like having something to look forward to like that. We're having a girls meal out this weekend for my Gran's birthday and the week after my boyfriend James is coming to visit so we'll probably do something nice then. I always think it makes a lot of difference getting out for an hour or two twice a week. 

A very inquisitive lamb I visited when I was at my Gran's last week! 

I'll update you all if something interesting happens but I'm really struggling to write anything at the moment. Perhaps watching constant reruns of Friends has frazzled my brain! 

Updates

Long time no speak! I know I've been a bit quiet recently but I've been so busy I haven't had much free time. But on the plus side, this should be a nice long post as there's lots to fill you in on.

Firstly, my chest pain really hit it's peak last week so I'd been battling with that for a while before realising that it was further down towards my diagram than it usually is and that my upper abdomen was tender to touch and swollen. So I went off to a&e last week and spent the day there. They did lots of tests but couldn't find anything wrong. But eventually they got hold of my specialist who said it was probably pain from the liver. The liver is encased in what's called a liver capsule, and it has lots of nerves in it, so what my doctor thought was happening was that the high pressures in my heart or lungs were pushing on the liver and that's what was causing the pain. He gave me a water tablet to get rid of excess fluid, and that seems to have helped a lot and I can manage the pain well with morphine. The only time it really gets near as painful as it was is when I'm bending over my laptop for long periods of time. Which isn't very useful at the moment as I have a ton of work to do for university, and has obviously made writing blog posts a bit difficult too.

I've had three essays and one presentation to do this month so I've been working like a house elf trying to get those done. I managed to get an extension for one of them so as with chest pain and tiredness I just couldn't manage all three of them. I managed to finish two film studies essays though which are marked as part of a portfolio with the presentation. I got really excited when I found out we only had two assignments for film studies but the sneaky lecturers put three assessments into one! Some real pain went into doing those as leaning over a laptop and loads of film theory books all week has had it's effect on my chest. But anyway, I've done all that now. All ready for a special Birthday week, which you will hear more about later. *wink, wink*

The day after I got rid of my chest lucky little me decided to throw up another pain. I had a serious amount of women's problems, which hasn't been fun. But I managed to get some medication to calm it all down ready for my birthday adventures, which requires me to be a bit more active and a bit further away from the bathroom than I'd usually be. There's been a good few times I've been curled up in a duvet crying "why me?" this week. Seriously why does everything happen to me? It feels like life hasn't given me a break recently. Well it better be planning to be giving me a break this week or I'll have something to say about it!

I'll leave you on the happy note that I'm about to go out with my lovely boyfriend for Valentine's Day and then off for a lovely weekend watching all my old baby videos, which my mum had copied to DVD just in time for my 21st Birthday. And then I'm going to be having a rather special birthday week, a lovely birthday meal with my mum and my lovely grandparents and another lovely birthday meal with my dad and then probably a week in bed recovering! But it's going to be a brilliant week and I'm very excited!


Happy Valentine's Day!!

Living in the Grey

I know I usually do a lot of posts about what we might call the lighter side of being disabled, because I think there's a good amount of humour there and it involves a lot of things that most people don't know about disability. However the subject I'm posting about today, I have never seen covered before, in blog, tv or magazine. So it's not too far away from what I usually write about in some respects.

Life to a lot of people is black and white. The longer I've been ill the more I can see this statement as being true. Humans like putting things in boxes, black and white boxes most of them. There are those who are disabled and there are those who aren't. Unfortunately life isn't that simple. Where do I fit into all of this? I am disabled, but it's my engine that isn't working to full speed not my kinetics. My legs physically work, I can physically put one step in front of the other. You could watch me walk down a corridor or up the first few steps in a flight of stairs and think me no different from any other person. But look away for a minute and look back and you might well see me clutching my chest for breath.

In day to day life it does not bother me that people don't know I'm ill. Why should it? Everyone wants to be treated equally right? Everyone wants to be perceived as normal. But there are people in my life who are not my close friends or close family, people who don't see me everyday but know me well enough to approach me in a public space, maybe go for a coffee or chat for a bit in the street. It's these people who bother me. You can almost see the confusion in their faces when they look upon me in a wheelchair in town when I was perfectly capable of walking from the disabled parking into the lecture room the other day. I don't know why it's so hard for people to understand that I have an illness which means I have good days and bad days. One day I might feel well enough to walk from my car to the lecture, sometimes I may not have a choice if I don't have carer with me to push me (wheeling yourself around is far more exhausting than walking!) and another day I might have a carer with me, oxygen on my face and be confined to the wheelchair for the day. But in any case, it is not difficult to imagine that someone may be unable to walk around town for hours or around a supermarket with their shopping, but can walk a little way into a lecture hall or up some steps into a shop. Surely I am in the same position as a young toddler in a pushchair, I can't be expected to walk all the way around town but it shouldn't surprise everyone that I can stand up and put one foot in front of the other a few times. Unfortunately I do get funny looks when I get out of my car, apparently healthy and then get into my wheelchair and I have had abuse from people when I've parked in a disabled bay. I got fully blown shouted at by a woman in a Mcdonalds car park because I'd pulled up and forgotten to put my badge up straight away.

I understand that society labels people and that being "semi-disabled" isn't currently a label. But it does create a bit of an identity crisis for people like me. I've given in, I don't mind being seen in a wheelchair or being considered disabled. But I know people in a similar position to me who reject the label and try valiantly to keep walking everywhere, to never be seen in a wheelchair or wearing oxygen because they feel like a fraud, because they're not completely paralyzed so it's like they don't feel right considering themselves disabled. And as painful as it is to admit it, I can see exactly where they are coming from when I think of the looks I get in public places when I stand up. I think we all fight the lazy stereotype. I went through school being called lazy by my friends and even teachers for not doing p.e. or saying no to walking down to the shops, or getting a lift home from school even though for sixth form I was at a school that was practically a road from my house. There's a sense of having to prove yourself, prove that you're not lazy, that you're normal or that you're disabled, because the truth is you're not any of those.

The fact that it isn't a huge bother to me isn't the point. There are other people like me, and there are people a lot younger than me who struggle with this identity crisis and when it's reinforced by people you know and like it can be very confusing. The name of my blog is a nod to the identity crisis everyone goes through being a teenager but for me was complicated by being 'the girl with heart disease'. I've embraced it, because it's a part of me, and if you are struggling with the same, that is my advice to you. Just be who true to who you are. It's okay to be different and it's okay to want to be normal.

I don't think the whole disabled identity crisis has been covered properly before, at least I've never come across anything written about it before. I wish I'd had someone to talk to at the time. I hope children's hospitals invest in nurses who can deal with the emotional side as I think it would have helped a lot. I don't know how much of what I was feeling I understood at the time, but just someone saying it was normal would have helped me a lot. So to anyone out there who knows a teenager with some kind of sickness or disability, tell them from me that what they're feeling is completely normal and you'll come to terms with it on your own soon but talking to someone will make it easier.