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.

Saturday, April 26, 2014

in out away and back again


6 week interval between posts isn't bad for me. But, I will say this, what a few weeks it has been. Ive had sick time, fun time, exploring, bonding, near 999 call, more sick time and just generally other stuff inbetween.

Best place to start, always at the beginning. When I last wrote, I was avoiding an admission by taking oral antibiotics. You guessed right, they didnt work and so I was admitted. It was just under 2 weeks the admission, on a new ward, which I fell in love with. The staff were wonderful, much more equipped for dealing with my age group (its a cf specialist ward) not to mention much better facilities such as fridges and an patient kitchen. There was some talk about if I were allowed to stay on the ward due to my trach, but then, non of the wards are really equipped and so they agreed that while I was well, I would be allowed to continue on this ward, as long as I was able to be seen from the nurses station. I had a lot of trouble keeping lines, they agreed on putting a longer lasting line in, but after 24 hours it was tracking up my arm and so it had to come out. For the remainder of my admission we fought with cannulas. Towards the end of the 2 weeks, I was starting to feel worse again and sleeping alot, but I also had a holiday booked with my niece and so, I was discharged late on the Friday and flew early Saturday morning. 

The holiday was  great. Lots of food, nice drinks and wonderful staff. We saw lots of sun, hired a quad bike and toured around a lot, played with nerf guns and just generally lazed about having fun. After shooting some of the bar men with the nerf guns, we bonded well with them and spoke to them a lot. One floor in the hotel wasnt being used due to being low season, so we played there and were able to play with the guns without bothering anyone. Neither of us wanted to come home.

But come home we must. I had been getting gradually sicker and the plane journey near finished me off. So much in fact, that about 10 mins away from home on the drive from the airport, I began coughing and couldnt stop. The crap off my chest had built up during the dry flight, not to mention that I didnt get time to grab a drink due to an annoying easyjet ground crew, who even asked if I were a heavy smoker, but whole different story there. While coughing, the stuff on my chest, instead of clearing, kept blocking off my airway. Panic all round, whilst I refused an ambulance, determined to clear it, but deep down, the longer it went on, the more I began to panic. My history has taught me to stay calm and think rationally and it was this, that after about 45 minutes of work, allowed me to clear my airway, without the need to a&e. 

Retelling the tale the next day to clinic though, we decided it would be best to come in and hammer the IV medication again. Its no been just over a week I have been in and I am as yet to feel the benefit. Physio can hear stuff finally starting to move, but I am just sleeping tons, so fingers crossed that something gives in the next week and I can begin to feel alive again. 

In the mean time, I am running literally hundreds of nebs a day. Morning an evening 6 at a time (atrovent/bricanyl/7% saline/regular saline/Dnase/tobramycin/Budesonide)Plus 3 lots 3 times a day. My last admission also showed I was growing ecoli in my lungs, so I now take a med when I eat to try and stop that. But, I have plenty to keep me busy and I am just making the most out of my time away from hospital.  

Wednesday, March 12, 2014

I be back

Ah, so you may or may not have noticed that I am back! :)

Court went well, with no problems like I have had previously, but this isnt some place where I can discuss that.

Aside from that, I actully put my blog back a while ago, life has just been a bit hectic, which is actully a really good thing.

In the last couple of weeks, it feels like the mist around me has finally lifted. There are many reasons for this, I think, such as medication levels being played with, time away from hospital, the court case being over. Thats not to say that my mood and such is perfect, but it is way better than it was a few months ago. Over Christmas and probably before then, I was feel very fragile. I had given up hope of things getting better and I was filled with resentment and no real purpose or goals in life. My time seemed to be come home, rest and get over surgery, spend a few days catching up on things like paper work, laundry and appointments. Book my next round of transport and hotels and then go back for surgery again. I had such high tolerances to the pain meds, that coming around, morphine no longer even touched my pain and I was needing IV ketamine followed by oral ketamine.

Now I am being careful not to blame the hospital to much, else I will end up dreading my next admission, but over the last year so much of my life has revolved around hospitals, admissions and appointments, kinda like a bad relationship. You dont realise just how much it has been taking out of you, until its suddenly not anymore. But that is no reason to never have relationships again. Or at least that is what I am telling myself.

But little things are slowly changing and I am being careful not to change them all at once, else I know I wont keep it up. I have cut down a lot on the junk that I was eating, hoping to lose a bit of weight, but we shall see. I am eating healthier and slowly trying foods that I wouldnt even try not so long ago. I ate red cabbage the other, I have started drinking tea (typically british, though I prefare lose leaf earl grey, black with just a touch of sugar) This week I have started drinking espresso, which is something that I never thought that I would be able to drink, but I am actully liking it, it gives me a bit of a boost when I have no energy. I am eating a lot more fruit and though I still love my truck (scooter) I am pushing myself to walk further. I still get out of breath and I get lots of disgusted looks when I have a coughing fit, espcially when I find myself having to stick my head on the side of a shopping trolley, to keep my balance while my muscles cramp from the effort, but thats people for you and to be honest, if I heard someone coughing like I do, then I think I would stay as far away as possible. That being said, someone did tell me I was disgusting the other day and that I should go outside. I was in a pub having food with my parents and I just couldnt help it. Kinda ruined the mood, but again, some people suck.

I am working on updating my wardrobe and have even been out today and bought a few new bits, including a little blazer jacket and some other items that I never thought I would wear. I am getting to that point, where I am too old really to wear hoodie jumpers and though they will always remain my go to comfort items, on days I feel up to it, its nice to wear something a little bit more classy. That being said, I am not ready to give up my jeans just yet. And of the course the most exciting thing about losing a little weight is getting back into my jeans that became to tight during my long admission.

hmm what else am I changing. Well, I am trying to go to bed earlier, doesnt always work, like tonight for example, but I used to make sure that I started my nebs by 1am, now I have pulled it back to 11pm (they take about 2 hours to run), though may work on getting it earlier once I find 11 easier. I have started setting my alarm clock for 10am and being out of bed by 11am. This week, I am working on getting over my fear of showers so instead of having a bath of a night time, and always putting it off so it ends up being about once a week, I have now started having one as soon as I get up, everyday, unless I know I am going to be out all day. If I am going to be out most of the day, I dont have the energy. It also means that I am dressed before 12, when normally, I would spend most of the day in my pjs. Overall I guess I am just feeling more alive and I am so thankful for it.

I am still working on moving my room about, always knew it would be a big job, but so far, gotten rid of so much stuff and it is not only nice to use but easier to keep clean. I promise pics once its done.

As for hospitals, right now I am avoiding an admission. I have just finished a 2 week course of cipro antibiotics and though I began to feel better on it, within 3 days of finishing them, I ache so much from coughing that I am hitting the painkillers again. The hospital, after many messages back and forth have decided to fit a port in my chest, to make IV meds easier, I am also hopeful that this will mean that I can run the meds at home instead of having to go into hospital. Fingers crossed on that one. They are also going to arrange some more sleep studies, to see if there is anything they can do to help my energy levels. I virtually always wake up feeling like I have not slept, I sleep for 10 hours plus most of the time as well as falling asleep during the day and finding it hard to wakeup. They want to look at my blood gases incase there is anything there. I doubt it will show up anything, but I am super thankful that they are still trying to help little moaning me.

As for London. London these days means two things. First off there is the side of it which I will refer to as medical, which is my appointments. I was there last week, and my trachea still looks red and inflammed, which is why breathing is still hard, but the inflammation also makes it easier to grow scar tissue again. Nothing they can do about that though, as they have already tried blasting it with all kinds. Breathing is still hard and you can hear me come from a way off, talking is also hard and often, I will talk and no sound will come out. It can take two or three attempts to get my words out and even then, only short quiet sentences. They want to try putting a stent in the airway to hold more of it open. I dont know how I feel about this. If I thought it would be straight forward, I would jump at it, but I have had issues with them in the past and the continual chest problems, can also add more problems to it. It could also mean another long admission. If it went straightforward, it would be a week, but complications could make it much longer. There is a possibility of going in in May, but I need to sort some stuff out first.

Now the other thing that London means, I am going to refer to as educational. Again, I am bound by what I can say, but I am working/helping out at UCL (university college london) on some medical trial stuff. I get to work with a bunch of people there including the professor that I met years ago. Its all very interesting and they are open to me doing as much as I want within the university. Last week I went on a course about research. I will write more about that next time, but it is so wonderful to feel useful again, to have even a slight purpose and who knows what it may lead to.

I was there last week. I travelled down on the Sunday and stayed with a friend. Spent Monday at the uni, tuesday I went to Camden with a friend I met on my last cruise and Wednesday I had clinic. It was a bit much in honesty. When my parents picked me up again on wednesday afternoon, I looked like crap and couldnt keep my eyes open, but it was worth it.

Right now, I am just so grateful so a huge amount of things. The uni for including me, the proferssor for having faith in me, my family for holding my up when I could no longer do it myself and my friends, for not only believing in me, but being supportive, yet truthful, for judging or arguing, even when conversations got hard and must have been difficult for them. For all the hospital staff, from cashiers, clinic nurses, drs, nurses and even cleaners, for treating me as a person and making hospital that little bit less icky. Without all of these people, I am sure I wouldnt have made it this far. And as I begin to rebuild myself and my life around my limitations, I can see that I would not have made it this far has it nto been for them, each and every person, in their own unquie way. So if you are reading this, Thank you. And to my followers, even the smallest of comments, can bring sunshine through a storm, can make you take a deep breath, rethink and retry. right now, I am still in the same place I was a few months ago, but now, I feel happy, like I have control of things and am in charge of my own destiny, no matter my limitations.

Anyway, long enough and rambling now. (but then name of the blog suggests it)

Horsing around in Camden