Sunday, October 19, 2014

The 3 Hs, happy, healthy/ish and holidays.

This blog has been well and truly neglected. I would like to say that that is going to change, but I think we know that it is not true. So many things have changed though. I think back to when I started this, to who I was. I was deeply unhappy and not just unhappy, I depressed and remembering how bleak things were then and the things I did, makes me shudder. I never want to end up with things that dark again. I put myself at risk so many times. Overdoses and injuries, infections and abuse. I hope to never end up back there. 

But even thinking back shorter periods of time, things have changed so much. I have come to accept who I am, mostly anyway and that for the forseable future I will have a trach. That one is not so easy. Yes I hate the way it looks, but more so I hate the inconvience of it. The machienery that is needed for up keep, the changes in my voice, to having no voice sometimes. The inability to have a conversation if I am using my hands, the added caution with things involving water, dirt, dust or infection. But even so, I have to say that I am making the most of things so far. 

I have lost about 18lbs, I am eating healthier and I joined a gym to build up some muscle tone. Admittedly going to the gym kills me and I have to run a truck load of extra treatments to do it, but it is focusing on the long term effects that matter more at the moment. Oh and I havnt been for about 6 weeks as my latests infection has completely knocked me on my arse.

But apart from that I feel that I am living for the first time in a very long time. I am doing things that I want to do and ejoying them.

I have just gotten back off holiday were I spent some time in Turkey with realtives and in Greece. A chance to escape everything and unwind. I have always loved travel more than anything. I even found wild tortoise (something on my bucket list)

Speaking of bucketlists, I also go to meet and shake paws with an old english sheep dog and attended Creamfields where I watched Avicii live. I am currently pursuing seeing the northern lights.

So many things. 
That makes it all sound like it has been fun and joy and it has in so many ways, but there has also been the usual background rubbish involving numerous courses of antibiotics and admissions for IVs. After many years planning, they figured out a way to put in a porta-cath, which is a port underneath the skin in my chest. This allows me to have IV medication straight into that now, instead of having to cannulas and needles. I have also had sugery to fit a stent into my airway, to try and save some of my voice. It is helping so far, but is also causing problems such as pain and potentially adding to my infection build up. I need to go in for IVs at some point soon (I was last in about 2 weeks ago, having gotten out for my holiday)

I never used to be able to understand how people could become obssesed with making sure everything is clean and things like health being such a big thing to them. To me it was always something that was either there or not. But as time goes on, and I find myself having to elvauate myself and my circumstances all the time, I find that it does become a much bigger thing. Kinda, ok my breathing is noisy today, what do I need to do. Is it airway or chest, ENT or pulmonary drs. Does the risk of antibiotics and immunity outweigh the risks of lung damage and scaring. Do I want to gain a couple of weeks of voice and good breathing, at a cost of infection, pain and exhaustion from surgery. Most days I dont know what the answer is, but I can see how it becomes a big thing. But in the end, I know that all I can do is to keep up my treatments as best as I can and hope for the rest to fall together. 

In the meantime, I aim to enjoy what I have. Keep working on things off my list and trying to achieve things that most people my age have already achieved.

Saturday, September 20, 2014


I have written so many entries and half entries. Some I have fell asleep whilst writting, some just never made the cut, some I have gone to post, but just didnt. But tonight, I feel I need to give speech to some things that I have been locked up in my fears box wanting to get out.

Dont get me wrong, life isnt bad at the moment, and nothing drastic has changed. But tonight, I am feeling a little raw.

I remember growing up, I was brazen and cocky and had no fear of anything. But time and cirucumstances have slowly chipped away at that facade. Some for the better, but some not so much.

These days, I have so so many fears. I fear that I am going to be stuck in this exact plase forever. That I never will find a cure, never find a work around. The life will always involve living from one surgery to the next, running merley damage control because that is all there is left to run.I fear that I will die before I have had a chance to make a mark on the world. I fear that I never will experince true love or any adult relationship. That my end will come or I will grow old alone. Never to have a family to call my own. Never to really achieve anything. Not an eduction, not a job or career not anything of worth. I worry that my parents will always argue. That they will end up spliting up due to their bickering. Or worse stay together and one of them suffer for so long. I worry that one day I wont be there to tell them both to stop. I worry that one day I will do something that I cant stop.

There are so so many things. Being like this for the rest of my life and never experincing true love are my greatest fears. And there is nothing that I can do about either. All I can do, is hope for the best.

And I am going to leave that there for tonight. My heart hurts sometimes and seems heavier than anything else. Its hard work living as if nothing bothers you, as if every operation is a walk in the park, that at my age, I want life to revelove around hospitals and medication and treatment. I want to just find peace.
one day....

Wednesday, September 03, 2014

Future progress and opportunity.

Things continue to go on the up and right now. I am feeling good and steady within myself. I have set myself small goals that I am achieving. Getting up at a resonable time (Which is before 10 btw) Still working on getting to bed earlier, but a few times I have fallen asleep mid night time nebs, which you would think would show me something but it takes a lot for me to get the hint. I am showering frequently, my room is tidy and everyday I am keeping on top of it. I am mostly keeping awake during the day unless I have really pushed it or gotten up extra early when I have a nap.

More than that, I have started eating clean and proper. Cut down on the carbs, and the junk food, completely cut out coke and soda. I have more energy I think. I have been trying to exercise. Small things, but I have noticed it getting slowly easier. And so this week I joined a gym. Now I am hoping against hope that I dont become one of those people who never use it. I wanted more advice on what I can work on and how. So after a session with a personal trainer, I have some better ideas. Cardio work is a struggle and so we have to keep that low and not push to hard, in order to keep my oxygen levels up and my pulse rate down. But weight work well for me. I aim to build muscle. I can do weight work, as you can go as slow as you need and still have it work. I am looking forward to going back.

My thoughts and aims is that is I build more muscle, my body will work more effectivly and therefore need less breathing to move around and leaving me able to do more. That is my theory anyway.

There is a long way to go, but I feel I am finally able to move on and accept who I now am, finally able to work on moving towards the person that I want to be, to achieve what I want to achieve.

I know that there will be obstacles in my way. I know it wont be a smoothe journey, but it is one I am ready for.

Oh, I also had surgery a fotnight ago. The findings were that my airway above my trach had closed to a pin hole, that was why I had such headaches and talking had become next to impossible. I pretty much expected it. For the time being the bottom of the airway, still looks inflammed, but scar tissue has no pushed its way through just yet. After talking we were throwing ideas back and forth, I like that I am able to do that with my surgeon. This guy is a world renowned surgeon and yet he can be honest about what he is thinking with me, can ask me what I think of his ideas and I am able to throw some ideas back at him to think on. Between us, we did come up with an idea, but the chances of it working are slim, however, it wouldnt require much hospital time and would be low risk, so it might be worth a go.  But for now, I am going with the trying to get my body into a better place first.

I think that it might be almost time for another adventure. I went to Alton towers with my 2 nieces the other week (Yes you read that right 2!) I was super excited as I seem to be building bridges and slowly getting family members back. Another one where time will tell. I guess there is a lot to wait and see for. Perhaps this is why the future seems so sparkly right now, it is full of opertunity, and that is all I have ever really wanted, the oppertunity for better.

Anyway enough ramble for the time being.

Thursday, June 19, 2014

Im ready.

I havnt posted in a while, I guess I have been trying to get a handle on where my life stands and how I feel about it all.

Last week, I had a panic attack, only a fairly minor one one night, but still, the first one I have had in a long time. Since then, I have done some pretty serious thinking.

I know what was bothering me, what was causing the problems. Its the whole death and dying thing. Things were put pretty bluntly and just when I thought that I had made up my mind, the words of the surgeon, bought my whole world crashing down upon me, making me reevaluate my decisions.

My mind has been everywhere, between denial and despair, joy and triumph. And its only now, as fear builds up its height, that I am truly able to see over everything.

Last year, my extended spell in hospital destroyed so much of me. It broke me beyond where I thought repair was possible. Not only was it a toll on my body, it was a toll on my mind, my spirit and my resolve.

But today I look back and I can admit that I was broken and it was scary. It has taken a heck of a lot of work to build myself up again and the mere mention of surgery was enough to make me quiver with visions of being the ill again. But I am not that person any more. I am stronger, I have faith in surviving again. Back then, taking a shower, would be a long and draining process. It would take all I had to manage it, before collapsing with exhaustion on my bed to sleep for hours. But now, I am still restircted, yet I am able to shower without needing a break. I am able to do that and more besides. I have made peace with who I am and more than that, I am oh so grateful for what I have.

These last few weeks have been amazing. From going to Turkey with my niece, to greece with my parents. Visiting Devon with my family and this past weekend, Alton Towers with my two nieces. I have taken steps to rebuild bridges, I am slowly bringing my family back together. Its early days and its baby steps, but my heart feels happier for it, at the prospect of once again being close to others.

Of course the flip side to that, is once they go home, I am filled with this lonely ache deep inside me. It has taken all of today and yesterday for me to put a name to this feeling and recognise it for being lonelyniess. But that is a good thing surely, for recognising, instead of wanting to shut away alone, away from everyone.

Right now, I am happy. I feel strong, I feel positive. And more than anything else, I guess I should say that I feel ready to defey some more medical boundries. So my sleep patterns not great and bad thoughts fill my nights. But right now, I am able to fight that.

And so, next week is going to be a simple in and out of hospital trip, everything to plan and I will bounce back from it, as I always used to. And I will talk to the surgeon. Its my turn to tell him where I think things are. That, sure, I am not runing any marathons, nor joing a talk show. But right now, I surviving. More than that, I am flourishing within my limits. I still have enjoyment, I am still able to do the things that I want to, just with a little more support than usual. I am not ready to pin my life on a risk. I am however ready to fight. Ready to achieve some more goals. Ready to kick ass and fight back.

And so, my thoughts are still against me, the dreams, the flashbacks, the panics. But my physical self is still here. I still have a way to go. And I am ready to go that way.

Friday, June 06, 2014

Take a breath and let it go

I feel fine. I feel happy during the day, occupied and my mood is fine.

But it gets to night, and I cant bring myself to wind down to sleep. Its silly oclock by the time I do drift off. But when the house goes quiet, and I relax and watch some tv, then the thoughts come streaming back. Thoughts of harm and damage. Cravings of death. Which is odd, as the thing that I want least during the day is death. But I know that damage is not far away either. It wont take much, just a small slip. But the thoughts wont leave me alone. At night, I feel truly terrified, but I dont know what of. I am apprehensive about going back to london in a couple of weeks for surgery, I am more so apprehensive about their plans for me and what I want. I also know that I am not strong enough for what they do want. Physically and mentally. Last year I was a mess, the time in hospital, left me broken, to the point that I am still trying to rebuild. There is no end in sight. But why does my mind spin it down to destruction and damage. Its thoughts like this that once again push me to a place where I feel so alone. There is no one that I can turn to about this, this isnt anyone who even knows my thoughts.

But on the other side, whilst this is going on in the background, I am enjoying life. Achieving goals, having fun, taking pleasure in the small stuff.

In the mean time, have my current favourite song.

When you watch he world just turn away
And break the promises it made
When love is all too hard to hold
Just take a breath and let it go

Tuesday, June 03, 2014

Rock and a hard place, but its not to bad.

Ive been meaning to write for a few days/weeks now. But the words have been lost to me. In here, I often talk about how I feel, but right now, I dont know what I feel. I guess, my current outlook is nothing has changed in the grand scheme, but I guess I should stop being so damn cryptic. This maybe a long one, but hopefully not to depressing.

So the last couple of months have been a bit of being here there and everywhere. My chest started to complain a while back, cue a week of oral antibiotics, which was extended to two weeks. Things didnt clear and began to get worse, so next came a course of 2 weeks of IV antibiotics. Things still didnt feel right, but I was due to go away. I had an amazing 10 days in Turkey, but struggled to keep my chest moving. Coming back, I had a emergency, where I almost blocked up. That scared even me, without my experince, I dont know if I would have survived it to be honest and at least not without major intervention.

This led to another admission for IV antibiotics, this time 3 weeks, yet I still didnt feel better. Culture results came in and I have 3 types of bugs growing in my lungs, which are all resistant to a lot of medication. Fun times huh. I had another course of oral antibiotics, to get me through my holiday (My parents took me to Greece for a wonderful week (more about that shortly)). but I still feel crap. We have decided however to wait and see how things go, before attempting to clear this set of bugs.

In between that, I have been to clinic down in London. That wasnt particularly inspiring either. After a discussion with my surgeons, we agreed that I am pretty much out of options. He said that he has seen a fair amount of patients get to where I am now (though not as quick) with repeated infections, that become resistant to medication. In the end, the infections kill them. One of the major downsides of having a trachestomy, as you bypass the normal preventative methods the body has for avoiding infections, to add to that, I have a lowered immune system to prevent my body rejecting my transplanted liver.

We spoke about the potential to put in place a T shaped stent, but we mutually agreed that it would not work for me due to my chest issues. So I am stuck at this place, where I keep getting more infections and treatment gets less useful. And there isnt an option there.

He wants me to go for transplant, when the opportunity arises, but I dont think that I want to go for it. It is hugely risky, with a poor outcome. Even afterwards, there is no guarantee that breathing will be any better for it. Previous cases are experiencing a lot of problems.

In short, it comes down to either, staying as I am and knowing the infections will kill me, or go for transplant with no idea on what the outcome is likely to be. Its almost like choosing which way you want to die.

And yet nothing has changed. I found a way to be able to use inhalers so that I dont need to be tied to my neb during the day, which is a good thing. My chest team are being excellent, trying for funding for meds that they hope will help.

As I say, for the time being, nothing changes.

And I still feel ok overall.
Just back from greece, where I was spoilt rotten and put on about a ton of weight. It was hard work staying well and harder still being discplined enough to stay in the room running treatments, when I just wanted to sleep in the sun.

The holiday was chil out time, time to relax and do not very much and belive me I feel better for it. (photos to follow)

And Saturday morning, the parentals are taking themeselves, me and my niece to devon for a week. Again change of scenery. but should be some good bonding time.

So right now, I am working hard on clearing my room. I never seem to be on top of it as I am never home. Its starting to look good now and I cant wait to be able to move around it properly.

It truly is the little things. I appreciate them a lot at the moment. The holidays, the time with family, relaxing. So whilst I know that the future doesnt look as bright as it once did, I know that the current time and the past are exactly how the should be, enjoyed, remembered and never discount the small things.

(I actully feel asleep whilst writting this, before posting it. Posting it now, but I am back from Devon, update to follow shortlyish.)

Thursday, May 01, 2014

wonderful time to be alive

Im a bit of a geek for saying this (and I may have said it before) but it is such a wonderful time to be alive. The rate that technology advances and the things you can do with it, never cease to amaze me.

I am part of what may one day be called the last internet less generation. I grew up without it, learnt to survive and research and work using books and pens, the tradational way. And so, I am still highly appreciative of the internet and all that can be achieved by it.

For example, how easy it is to view and find information. Walking around the local town and wondering about a building or a place, that I have wondered for a long time, these days, I just get my phone out and within seconds I can find the all the information I could ever need on it.

I go to buy something but want to know if it works or if it is the right price, seconds late I know the answers. I feel that I have learnt so much over the last few years, simply by being curious and having access to the web.

So much revoloves around it. Friends, social, games, shopping. It amazes me how easy it is to access any information.

Ah, im being a nerd, but sometimes, that can be a good thing. The whole taking pleasure in the small things. The small things are what count. I love advancments, and science and progress.