Note the 'For now' part of the original statement.
Oh and here’s the glorious song I was singing in my bathroom, on the floor, during the weirdest 10 minutes of my day/LIFE. Just incase you forgot to listen to it.
It’s brilliant and you should listen to it. Really really. Anthemic I tell ya.
So I was just sitting in the bathroom on the floor, looking in the full length mirror, thinking about virtually nothing. I seem to do this a lot at the moment… I sat on my phone and a song started playing, and rather than stopping it I decided to start singing along really loudly (said song was No More Running Away by Air Traffic). When I was singing along I started to think about how much I’d love to have proper singing lessons. I sing all the time around my house - I don’t claim to have a good voice, but I have A voice that’s not completely tone deaf…. but, my breathing’s all over the shop. I have good breathing control (you have to to stop yourself coughing and panicking and all sorts) but I don’t know how to use that to make NOISE… ha.
ANYWAY, when I went to Harefield (my future transplant hospital) they had a poster up in my room advertising ‘singing for breathing’. It’s a workshop they run for post lung transplant patients to get them to use their lungs properly. This class not only helps you to sing but more importantly breathe - we’re obviously not used to such a crazy lung capacity after years of having less than 50% (or in my current case less than 30%) available, so we need to learn to control it. I asked one of the nurses about it and she said it’s a great thing and some of the patients actually have semi decent voices, so I was intrigued - hopefully if I get a transplant I can have a go when I’m in recovery, see if we can make this voice a little less painful for my neighbours! ;)
This thought drifted and before I knew it I was ‘speed daydreaming’. I call it ‘speed daydreaming’ because a multitude of thoughts unfolded in quick succession - all linked, but loosely, almost like separate mini daydreams. It started with me auditioning for ‘The Voice’ Don’t laugh! I know you’re laughing inside. It’s ok really. Me? Singing on The Voice? PAH. The reason I was thinking about it though, wasn’t for the being on telly part or the going any further part - what scares me about going up on a stage is everyone looking at me. And I KNOW on The Voice there’s an audience, but if you were going there, would you really be that bothered about the audience, when you have 4 massive (well…) recording artists sitting with their backs to you? I don’t think you would. Well, I don’t think I would. And I think that would be the most comfortable way for me to have a go. Even though it’s on telly. Does anyone see where I’m coming from?
This short daydream, of me auditioning and having the balls to actually do it, post transplant, then went onto me thinking about what else I could try post transplant. I had clear visions of me absolutely knackered, running the london marathon. I’ll say it again, don’t laugh! I know it’s a massive long shot, but it has been done. It can be done. And if I have any say on the matter, IT WILL BE DONE.
This then somehow went onto general images of me waking up after the op. Now after transplant you’re kept in intensive care, sedated, supported by machinery and with tubes and shit everywhere - I won’t be aware of any of this and hopefully won’t remember,if all goes to plan. When I’m ready, IF I’m ready and there’s no complications, I’ll come off intensive care and onto a ward, where I’ll be slowly brought back to my senses. I’ll still have lots of tubes and wires attached but I’ll be conscious. And I had visions of seeing my mum and asking if it had been done and all was ok and her simply nodding. And dya know what happened? I started to cry real happy tears. I was fucking daydreaming, and I cried happy tears. It was the most bizarre experience of my life I think. I don’t know whether it sounds bizarre to anyone else or not? I’ve daydreamed about my future and amazing scenarios before, and I’ve got a little happy or a little sad, but it was like an out of body experience, as if I was actually there, seeing it happen, and it made me so happy for a second, to think that that could be me, eventually, if I’m lucky.
I then went on to think about something that I somehow got talking about today - having babies. I pictured calling my mum and asking her to come to a serious hospital appointment, keeping the whole thing a secret. And then turning up and telling her it’s a 12 week scan. Now, I KNOW that’s REALLLLLLLLLLLLY WEIRD. Really weird. But when you’ve been told that you can’t have children because it will kill you, even though it’s one of the only thing’s you’ve always wanted, and someone at Harefield turns around and tells you you can have babies 2 years post op, it becomes something you allow yourself to think about again. And this, after the weird crying moment I’d had a couple of minutes before, produced the most unholy amount of happy crying ever. It was so so odd. It was as if I could see into the future, like this could actually happen like it did in my head, to the point where I had happy crying giggles. Yep. REALLY REALLY.
So yeah. That was basically the weirdest 10 minutes of my life. And it all happened in my head while I was sitting on the bathroom floor, looking into a mirror that initially felt like a brick wall and turned into a garden of roses. It’s the happiest I’ve been all day, and it was all in my mind. It’s tragic when you say it out loud, terribly so, but it was a slice of something quite lovely that’s given me a bit of a lift really.
I hope this weird little story has made you think about your future and little things that you really want. It does help to keep you going. And I also hope it’s made you feel a little less weird about the things you want/do/think about/etc…?
Loros is a hospice based in eicestershire for the local terminally ill. It’s a respite care centre where people come to give carers a break or to die, basically. In my case however, I was visiting for an assessment for a course of ongoing palliative day care (it’s treatment that focuses on the relief of my current suffering).
One of the first questions I was asked was ‘if you were to collapse, would you want to be resuscitated?’. I sat there and thought about it for a minute - I knew what my answer would be, but it was terrifying to hear that within those surroundings, despite there being laws about medical professionals aiding a scene on and off duty, I could sign a form to be pretty much left for dead. I understand why they ask - without meaning to sound insensitive, it provides a way out for long term sufferers that can’t be euthanised…
Anyway, after I said no I was asked a series of questions about my current state of physical and mental health, and what I’d look to get from palliative care. Basically, the scheme is run across 2 centres 3 days a week - I opted for a Wednesday session, whereby each week I would be expected to be there at around 10am and picked up at 3pm - a full day. In that day I would have access to endless tea, biscuits and cake, a comfortable seating area, complimentary therapies (massage, reflexology, aromatherapy, etc), art therapy (free reign to create anything I wanted to, be that with paint, pencils, canvas, paper, and other artistic mediums, as well as other creative activities like sewing, sculpture, photography, pottery, etc.), other forms of creative therapy (in the form of music, writing, poetry, etc), counselling and just set free time to read or do whatever else I want to do in the space provided. I get lunch too, provided by local volunteers and a team of palliative nurses and physicians. Sounds like a lovely little break to me.
I’m hoping to really throw myself into the creative end and create some magical things with my time - I don’t think I, or many people really, set aside enough time to be creative. It’s meant to do wonders for the mind, so I’m quite excited to start. I need a break from over thinking this illness and general life stresses that gets me out of the house and hospital, before I completely lose my shit. I’m hoping it works out, I really am.
The only possible downside really is that everyone there is a lot older than me. The youngest person in today’s session was 49 and even he looked like a grumpy old man! Haha. I appreciate that most people suffering terminally or with ongoing issues of a different kind are of an older generation, but it would be nice to see a friendly younger face some time (not that I want anyone to be ill enough to warrant palliative care, but still).
I guess we’ll see how it goes. It was quite evident today though that I need the counselling side more than anything, simply because I cried my eyes out when they asked what I’m angry about and how my family and peers cope and how I think people understand me. I don’t think they do, and that’s the whole point.
It really isn’t my place to say and it really is his own decision, but I think my CF mate is tempting fate a bit by putting off his transplant assessment. I know it’s a personal choice thing but I know someone in a similar position to him and she’s been told her chances are slim. It all depends on his blood type I guess. I just fear him thinking that he has ‘a few years left’ is an unbelievable long shot.
If you’re too ill they won’t take you on, simple as that (he knows his body better than I do but my decline took me by surprise and I don’t want his to y’know?). And he’s a bit of a ledge in camp CF so it does worry me rather a lot. Wouldn’t want to tell him the extent of the admiration I have for his general ‘Fuck CF’s a cunt’ attitude, a) because he’s not at all sappy like me and b) because it’d inflate his ego to epic proportions (and trust me, he doesn’t need that ;)).
Anyone that reads this and is acquainted with said person will know exactly whom I’m referring to and will probably understand.
So the programme on ITV1 is brilliant. Insightful and honest.
But it’s a kick in the stomach now. We’re about to see someone who’s son died waiting. And I don’t know how I’m going to watch this. I have to though. You can’t ignore things that are going on around you just because they don’t affect you at that very moment. People die waiting, I could die waiting. That’s the fact of the matter, and there’s nothing any of us can do about it, other than sign up to do our bit.
Flick your TV on, ITV at 8pm for 2 consecutive programmes on organ donation shortages and transplants throughout the UK. Insightful shows, I promise (Pixie Lott’s legs even feature post-9pm, who doesn’t want to see those?).
Us fighters need you, please support us and sign up NOWWWWW!
The post didst not appearest. Or sutin.
So basically I got an important call this morning, booking me in for my transplant list official assessment. Which basically means they’re testing me to see if I can move from the waiting-waiting list, to the lung-waiting list. That in turn basically means that I may therefore actually be on the edge as of January, listening for every time my fucking phone rings, as any possible call after that assessment could be for shiny new lungs.
This is a good thing and a scary fucking bad thing obviously, because I’m terrified of the whole ordeal and rejection and everything, and now shit is getting seriously real! But as I said, it’s a good thing. I just wish a cure had come along first, but what can you do?
Wish me luck?
TODAY IS A GOOD DAY.
I got my letter through confirming that I’m now entitled to Disability Living Allowance and Mobility Allowance, both at the higher rate, for life. Which basically means that I’m going to go and order the car that I’m entitled to before Christmas and that I should always have an income as I may go through fits and starts with work. For those that don’t know, this is a benefit system in the UK that provides monetary allowances to adults with a disability (or their carers) if they are unable to work, walk, do things for themselves, frequently need to travel to the hospital or anything along those lines. It comes in various levels/forms and I have been awarded the highest levels as I’m officially termed ‘end stage’ CF.
Also got some money from the Joseph Levy fund towards my uni expenses - I got this because of my CF too as not many CFs actually go to university here in the UK as it’s a struggle medically speaking.
Ahh. Relief. Well in son. There are some benefits to being permanently ill and forever disabled finally! I’m so grateful for that and so happy right now eeeeeeeeeek. A nice treat at the end of a terrible year.
I hope y’all are having a nice day :)
People still don’t understand that that means death.
I’m not looking for sympathy, but understanding that that is now fact from the horses mouth (my doctor) would be nice. This is a permanent big deal, of 40 weeks a year minimum on IV antibiotics and intensive treatment that could potentially do more harm than good. This is me working up my exercise tolerance and endurance so that I can still live during these procedures, this is eating 4000 calories a day to maintain the weight so I don’t get turned away from transplant. It’s a full time job. I don’t simply get better any more, and it frustrates me that some people don’t understand that.
And the transplant, even though positive if I get one, is only moving the death curve to (hopefully) give me another 10 years. It doesn’t solve the problems as such, it just mutes them for a while.
It’s so hard knowing what to say to everyone that’s been so supportive and lovely, other than thank you all, I don’t know what I’d do without you and I’m here if you need me still. But it’s harder knowing what to say to people that just don’t get it, because this isn’t drama for the sake of drama, this is real life and the potential end of it that I know they won’t understand.