Needed - Balance

I have said it way to much but still say it now. Nights like tonight, I need to write. I need to remember, I need the emotions. Yet I doubt I can do any justice to this. The subject is to big and I am too exhausted.

But days like today, things change and change a lot. They give me such a glimpse to the future and now always in a good way.

Today, my parents visited, I wasnt expecting it, they just turned up. I cant say how I felt. I knew that I looked rough and that it would be a shock in a way for them to see how much has changed in the last week or so since I last saw them.

What I hadnt prepared for though, was how much of a change I would see in myself.

I have done long term hosptial stays and I know they have an effect on you, but you can work on it once again when you get out of hospital. But this time, I couldnt keep up with a visit. My body was not physically strong enough to keep up with just sitting.

Simple things, I am lying on my bed quite comfy, no real stress. But I still had to have my nebs running all the time else my chest felt too tight to get the air in. I was mostly just listening to the conversation happening around me but rapidly finding out that in fact, even had I wanted to join in more I couldnt.

If i planned agead, I can control my breathing to get one full sentence out at a time followed by a couple of quick breathes and a few more words. But this was not susuataiable. To hold conversatin, became a chore or breaking things down. 4 words seemed to be my limit. So 4 words followed by 2 big breathes and 4 more words 2 more breathes 4 more words. And so on till I got my sentence out. You can imagine how long anything took to come out.

And if dad didnt get what I was saying or interupted me, I wanted to throw something at him.

Mum could see how hard I was finding things and took pity on me. Taking themselves off to do there own things and come back later. I feel guilty that they have traveled so far to come see me, only to find I cant keep up with them. Its not a nice experince.

Bless her though, she goes into full Mum survival mode for me. Making me nice food, tidying my drawer up, sorting my washing. Anything she can do to lessen the load on me.

Part of me wants to say, its not meant to be this way, not this quick.
But then, perhaps this is ideal. Maybe we both needed the harsh jolt of reality to show where we are up to.

Dad didnt like the idea of leaving me tonight. He was suitably anxious at how hard I was finding it just being right now. But as mum explained to him, it was the effort of me being there that was causing me such issues. If they hadnt been there, then I would have been resting my muscles instead of trying to force them to breathe and work.

Time will tell and tomorrow is a new day and all that jazz. But today has been a steep learning curve for all involved. One that shows just how close to the edge i am wandering right now. One wrong slip, one lose pebble and it could all come down on top of me.

roundabouts

My mind is in a mushy phase and I am not sure if I can explain it.

Things right now are not ideal. I think everyone knows that. Right now, I am spaced out and tired. My pain issues seem to go in an inflammatory patter. As if my body says ouchie ouchie lots and I have a lot of pain. Then gradually, it lessened  it forgets about the pain and forgets to remind me. I get a few days of no pain. Then one night, I will wake in agony again, as if my body has decided to say, oh you do know that pain is still there right? Let me show you where and I will be as loud as I can so you cant miss it.

right now, I am in the midst of one of these flare ups. Which means that I am dosing myself up on numerous meds including my morphine. You see when it hits, I have to keep on top of it, every 4 hours or so to take more. Whereas just days before, I wasnt taking anything.

It is frustrating, but the most annoying part is how the meds make me feel. They suck away the last of my energy, they make me tired beyond belief. But heres the funny part, I cant sleep. I will close my eye, and begin to drift off and then I will stop, stuck in that place for hours between asleep and awake.

Then comes the itching. I take piriton and such, yet I scratch so  much people must think I have fleas. Scratching feels good though. The sensation of scratching an itch is a wonderful feeling of relief and pleasure. But the more you scratch, the less pleasure, as your skin becomes raw and even my finger joints swell from the movement.

And the added side effects, the long term disadvantage to all the surgery, is that the pain gets worse. Operations have complications. Where as my pain at one point was limited to my throat, it is now also between my ribs and in my thigh. Today, I almost cried while standing in a clothes shop. It felt like someone was stabbing me in my leg. Its been numb for months, kinda like when you spend to long moving stuff in the freezer. But this was differnt, this was sharp. I just hope that it is the graft growing, rather than dying.

But do I really hope that?

My first answer would be of course I do.
But on reflection, the risk of making things worse is high.
I have had this trach in for over a year now. The wound has healed. The tube is steady. And I cant help but think back to last year, where the tub get drifting upwards, leaking lots of fluids and causing so much irritation that every part of me ached from coughing.

I know that the trach will be coming out, then going back in after the surgery and hopefully out again a month later. I hate dealing with a new trach.

Of course, to add to that, is the possibility of more complications. Of ending up worse than I am now.

Of course, it is a risk I will take, but I dont go into it blindly. I know the potential for reprecussions. I know the risks. And that is why, I stand my ground and say, this is the last big op I will risk. Once the trach is out after this surgery, My wishes will be made clear and documented.

Its not that I am being negative.
I guess i just know, deep down, that I can be an awsome person. I can do amazing things for myself and others. But I cant do it with this leash around my neck. It is holding me back and there is only so much of that I can take before I go crazy.

I wasnt born to be a hermit. To talk to virtually no one. I shouldnt be terrfied to go to sleep, nor stay up till the early hours of the morning trying to avoid sleep and thinking. Yet I am and to add tot he comical features of that, I am also terrfied of the day time. Of the work I need to do, the tasks to complete, the potential for things to go wrong.

Its like I am scared to sleep yet dont want to face waking. So I end up not really doing either and getting nowhere because of it.

I know my fears are getting out of control again. I know my anxiety is rising and I know my risks are too. Choking in the middle of a shop, whilst people stare from a distance. The worried looks, from both the passers by and whoever I am with. Tears running down my face from the pressure of clearing my throat. To finally clear it and feel totoally overwhelemed as a wave of exhaustion hits.

To have to put so much force on my narrowed airway, to get the crap out of lungs, that I often bring up my stomach contents at the same time. I have been on meds for over a 18 months, to try to prevent coughing up blood, but little controls it. I barely even notice it these days, just another chronic to add tot he list. Since when did blood become just one of those things, like breaking a nail or stubbing a toe.

My body is in such disreagard. My lips lacking colour, my nails snapping or falling off completly, my skin flacking off and my memory being so poor that I am able to watch a film one week and rewatch it the following week not recalling any of it.

and yet I know I am lucky and I am oh so greatful to be here. I know that there are people in much worse condition than me. And yet it is the fear that holds me back. It is the fear thatbrings the toneof everything down. Now if i could just sort out this whole sleep mess crap out instead of falling asleep in the most odd places and positions, then perhaps I can deal with some of these mushy brains and ideas and memory.

I am thankful. For so so much.
For the chance, for the hope, for the time.
But I am at a cross road, balanced on a needle tip, having everything on one side and absloutly nothing on the other side. spining, spining, round and round and out of control. Where will it stop, nobody knows. damage control, traffic control. permission to land.

Sleep, the enemy and the best friend as my heart pounds away, eager to see how tonight will end and the next begin.

Thinking

Well I am still in, which I am not as upset as I thought I would be.]
The other night when I couldnt sleep, turned into a full night of being so wide awake, more awake than I usually am of a day. The next day was hard, I ended up getting up at 7:30am and having a shower in hopes of it waring me out enough to get a couple of hours rest. No such luck, but an early night the following night saw me getting some rest once again.

Monday, on ward rounds, I was feeling better, but still not where I usually am after a 2 week course of IVS, so we decided to send off some more samples (I was meant to send them last week, but given that I wasnt able to move the crap on my chest, I hadnt ben able to get anything) and give a couple more days of IVs, given that my line was still playing nicely.

And so that finds me here, with far to much time on my hands for contemplating.

I think I am reaching a place where I am starting to forgive myself for not bouncing back the way I should of after transplant. You read so many stories of people getting a new lease of life and making the more of it. I have always had this guilt, that i was not worthy of such a gift because I have done nothing with it.

But time is healing and I realsie, that coming back out of ICU, I was unlikely to bounce back. I am reading a lot of documents at the minute for the solictors and they are giving me more info into the past. Coming back from 3 months of lying flat and not using any muscles is hard enough for anyone, but I did it with a crappy airway.

Since getting out of ICU that first time, my airway has been at about 50% what it should be. Coupled together with damaged lungs and a healing abdomen, its no wonder I have never been able to return to full fitness.

As I sit here and watch the meds go straight to my blood stream, I know I am lucky. I know I have a long way to go before my body gives up. And believe me i am thankful for that. But I also know where my frustration leads from. I want to be doing things, yet my body dosnt let me. The airway is a problem, but its the effects you dont think of from that that give the hardest problems. The constant exhaustion. The fact that even a small excursion is enough to wear me out so much that I sleep for the entirerty of the next day.

 Its not the breathlessness that gets me down, its the constant exhaustion.

But alas, It is what it is and all I can do for the time being, is wait for change and make the most of the oppertunties that present to me.

To the Seas.

Time to write at last. It has been an odd couple of weeks and my mood is playing up to the point of annoyance. But I want to catch my blog back up. So this is going to be a catch up on my holidays as I had a lot of fun and took a lot of photos.

I boarded the ship on December 12th, mid afternoon, having travelled to London the day before and staying with a friend. I still wasnt feeling great, but wanted to spend some time with her. I dont think I turned out to be much company as I was so exhausted that even conversation was tiring. But it was nice to catch up anyway.

I had a huge room on the ship, with one of those beds that are bigger than a single but smaller than a double. The room was lovely and whats more I had a nice bath and shower in my en-suite  With me not being a morning person, there was the option to order room service for breakfast, I of course took that option and enjoyed pretty much having breakfast in bed. Though, I did get a very small strange look, when I answered the door in my cookie monster pj bottoms and my scooby doo tshirt. I am just that classy. 

Breakfast was tasty.

We has 2 days were we spent the whole time at sea. There was no time to be bored though as there were so many things to do on the ship, from craft classes, to lessons in playing bridge, to dance and many other things. On the second day at sea, things got a little rough. Being out in the middle of the North Sea in December, it is expected to get a little windy, but there were lots waves and the boat got bounced around everywhere. If I recall, it was a gale force 11 storm. I must say, it is one of the most odd sensations, to be standing on a boat, whilst it is moving forward and the waves are rocking it from side to side and then you get in the lift and travel upwards. Your body dosnt quite know which direction you are going in. I luckily deal well motion and so I barley noticed the rocking. However, not many people ventured out of their rooms, not even for dinner. And the following days, there were a lot of signs of injuries, bruised faces, people with broken arms and/or ribs.

After that, we made it to our first docking point; Oslo, Norway.

They had had a fresh falling of snow during the night and so we woke up to a white wonderland. It was so pretty, if a little chilly. After having breakfast, this time in the restaurant  I wrapped up warm and headed into town.

The markets were a little differnt than most of the ones I have been to before. Stalls were hosted in  wigwam type structures and there were open fires around to warm up by.

The food stalls sold the usual type of things such as hot dogs and hot chocolate as well as the more unusual stuff such as reindeer meat and smoked whale. I was not adventurous enough to try any of them, though I did have some mulled wine. Norwegian mulled wine is much sweeter than its French counterpart, as it is made from raisins rather than grapes, as they store better in the colder temperatures. 

Even the birds seek out shelter where ever they can.

I got talking to the most wonderful man whilst at the market. He sold pieces of natural slate, that has a type of moss growing on it. Around the moss, they have painted woodland pictures, so that the moss becomes part of the image, a type of living art. The paintings were all so pretty. I could have pretty much bought every item he has. From foxes, to deers and bears, to rabbits and owls. Every piece is unique and hand painted. He spoke very good English with the most wonderful accent. He didnt live in Oslo, he was from much further north and explained, that in the summer months, they find the slate and paint it, whilst running a guest house. When it gets November, he comes to the city to sell the items on his own and heads back just before christmas to be with his family. I couldnt decide which piece I wanted, but in the end settled for a very realistic bear painted on slate and made into a clock. If the items had not been so heavy, I think I would have purchased more than one. He gave me a very good price on the clock as he only had a few days left in the city. (It is worth enlarging the above picture and zooming into some of the piece, they are most wonderfully painted.)

In the centre of the market, was a square with railings that is there all year round. When the ground begins to freeze, it becomes a natural ice rink and they just smooth it over once a day. Unlike most ice rinks, if you have your own skates, you are free to come and go s you please, with no cost. There was also somewhere to hire skates. As the day went on the rink got busier with local children coming out to play.

A view of the ship, with the snowy backgrounds.

You can see the steam coming off the pool and jacuzzi, whilst docked in Norway. 

It was very postcard like.

The next day we landed in Copenahgen, Denmark. It was a drizzly morning with lots of fog. Walking down the road, admiring the buildings and in a little world of my own, I almost walked straight into someone walking across my path. As I glanced at them and went to mumble an apologise and carry on, I instead froze on the stop. The person I nearly walked into was carrying a rather large gun and an even bigger sword. Turns out I had just happened to walk past the Royal Palace and the guards were marching on the regular patrol. You can get close enough to touch their palace, no railings like in London. The best way I can describe it, is like a large roundabout, with minimal traffic. There is a statue in the middle, then circling that, are houses. The queen lives in the bigger of the houses with her husband and her family live in all the other houses in the circle. The guards patrol around the circle, but people are free to come and go as they please. It has also been known for the queen to venture out and speak to tourists who have come to view the palace. 

Most of the buildings had been eaten by fog, but the one in the centre of this image, I cant remember what it is, but the steeple, is 3 dragons, with their tails twisted together pointing upwards.

The main thing in Copenhagen for Christmas, is a theme park, that has been lit up and decorated. All the lights made it appear very magical. The squeals of children on the rides, the different smells from the food stalls and the colours lit up everywhere, made for a very enchanting atmosphere. I did get a little lost getting here, so didnt get as much time as I would have liked, but I loved every minute that I was there.

After another day at sea, the next stop was Hamburg in Germany. Although there was no snow, it was very cold. I was most proud of myself for making my own way to the city. There was a shuttle bus from the ship, but there was a huge cue for it and it was £5. I ventured out on foot and within a few minutes of walking, I found the metro train, paid the equivalent of £2 return and got into the centre of town before the first shuttle bus had left. Plus I like to people watch so it all worked out.

I of course, being in Germany, had to have bratwurst and mulled wine for dinner, whilst being entertained by traditional German musicians. 

The main market was outside the town hall, but there were markets everywhere you looked. The one below, included a bar, hidden within a maze of fir trees. You literally felt like you were lost amidst a forest here, though it also felt warmer, as the trees offered shelter from the cold wind.

The main archway into Hamburg market.

A stall selling mistletoe offered such vibrant colours against the dark skies.

Though the geese running around the centre, were not afraid of humans and in fact like to chase any small children, or adults for the matter, who looked like they had food. I actully managed to stroke one, but I do love this picture, although not the prettiest of pictures, seeing the water droplets sitting on the feathers kinda brings the scene to life. There was a homeless guy wandering around picking up peoples left overs and feeding them to the geese, not sure if that is a good thing or not, but he seemed very friendly with them.

When you are moving around and wrapped up warm, you sometimes dont notice the cold. That is until you look to the water nearby, and what appears to muck or rubbish floating at the sides, is actully huge chunks of ice. If I had been a little braver, I might have picked one out, just to see how deep it was, tip of the iceberg and all that.

Of course, I do love my low light photography, though it was a little crowded to get the perfect shot, I was happy with some of the ones I managed.

Around the top of the market stalls, there was a little train that went chuffing round and round. It is the small touches that make a big difference. 

Last stop was Bramerhaven Germany. Cant say I was very impressed. Perhaps, after being in such a big city the day before, I was a little underwhelmed here. It was a small town, I got the impression it was a poorer town. The market consisted of about 8 stalls and the journey from boat to market, was a long one through roadworks and rough looking docklands. Though, I did try mulled beer here, which was quite nice and it being a small town, fitted my energy at this point.

Of course inbetween all of that, there were lots of things to do on the ship. Every night there was at least 2 shows on, from Abba, to Las Vegas, to a crew talent night, to comedy. The dancing was fantastic, the voices wonderful and the costumes, were just perfect.

During the staff talent show, the guys from the engine room came out dancing to the crazy frog song. They got the biggest laugh in their orange jumpsuits. Really was a funny show.

http://www.youtube.com/watch?v=WxG2UESadjA

Of course, I knew the talent of the catering staff, I had been eating their food for the past 9 days, but on the last day, was the Gala buffet, to showcase the talent. I was always taught not to play with my food, but the things they came up with, perhaps I was taught wrong.

I also met some great people, staff and guests alike. It has been a long time since I have laughed so much. And of course sitting talking, I tend to like to keep my hands busy. Which resulted in me making hats out of the napkins. Which, of course escalated to seeing how many things I could balance on my head whilst walking around the ship. I could see a guy sitting at a table 3 over from us, kept looking over and laughing, so I said he must think I was insane, in the end he was one the worst for suggesting more things to balance. From tea pots to christmas trees. Bear in mind this is about 3am, so most of the ship is asleep and we had the dinning room to ourselves. 

I actully ended up sitting drinking tea, with all that on my head and just having normal conversation. Pretty much forgot about it, till someone at the table would look over and burst out laughing again for no reason.

I got talking to a lot of the staff and a lot of the higher staff too. They were all lovely and a wealth of information, from weather, to places to visit. So on the last night, it seemed only fair to play with them a little. We hid the reindeers from one resturant, around the ship, the main one being sat on the captains tables, with the reins going to the captains chair. He had a note to the captain, about not worrying about petrol in his ship, as if he got stuck, rudolph caould always pull him home. The staff laughed a lot and I hear the captain heard about it and had a good laugh also. It was nice to unwind. 

Though walking past the gingerbread village, always made me feel hungry as the smell filled up room.

I did have the most wonderful time and I am glad that I did it. However, I also promised to keep this blog as honest as I could and so I want to add a little of the flip side. I think going on this cruise, was one of the hardest things I have ever done. I went away on my own last year, for 4 days, but things have changed a lot since last year. Not only did I have a full voice last year, I also didnt have a trach tube. Outwardly, I was much more normal. And though I dont want things to get in the way, there are always questions. From people at lunch telling me that they were worried that I was going to make the whole ship ill with my cough, to people staring. To not being able to make conversation at the dinner table as my voice was not loud enough. It was hard and it was exhausting. My days at sea, were mostly spent asleep. I needed the rest and I needed the energy to stay on top of my treatments. 

One morning I also woke early, coughing and chocking and bringing up blood. Now I have done that before, but never to the severity that I did this time. I knew I could manage things, but it is still not a nice experince and is one of the most tiring things I can think of. You have this fluid coming up and you cant stop it, all you can do, is keep coughing and hope not to keep your airway clear, by leaning with your head down.

As I said, I am so glad that I did it and I had so much fun. But, it did also take a lot of work and discipline, to be so exhausted and just want to sleep, yet sit up for another 90 minutes doing nebs and physio. To deal with all the questions, the stares and the attitudes of some people. I am proud of myself for doing it and I have no regrets. 

Plus, seeing family over christmas, and they always ask what I am up to these days. It was nice to be able to tell stories of travel instead of hospital based crap and excuses as to why I cant work.

And just to end back on a high, I cant wait to go again. Same ship, same crew hopefully. Really excited already.