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.

The past (contains abuse)

I am pacing myself and still doing well. My mood is good and my health is stable and for that I am most thankful. It makes other things easier to face.

And example, tonight, whilst watching casualty with my fambo, one of the stories was a girl who had been raped. She didnt think people would believe her, but then confronted with the person who did it, she was like a rabbit in the headlights. She didnt know what to do, where to go, but the fear, you could see.

I know that it is only acting, but the part was played well and bought back so many memories. It is something I have struggled with for years, still do, but its not something I mention, not something I can bring myself to confront. Mine was differnt, for a lot of reasons, but, I didnt want to go through with charges, because I didnt think people would believe me. And truly, they shouldn't. I would say that I was assaulted, but I could never say that I was forced.

The person who did it, kept me locked in his flat one night when I cared to much and tried to help him. The night was a very long nightmare, where I almost lost my life more than once. I hurt everywhere from being forcably restrained. A 16 year old girl has little chance of escape from a 26 year old male, yet I tried. It resulted in strangulation more than once. To this day, I still feel that I only survived that night due to trying to be cunning and pretending to pass out in hopes of getting him to let go. I think the final time, if I had waited till I passed out fully, I would never have come around. But it was on the third time that I gave up all hope, that I came to the conclusion that nothing matter because I wasnt getting out ever again.

Every beat of my heart seemed to bring a new surge of fear and I fought just to take air in and out of my lungs. I stayed in that state of fear and anxiety for hours that seemed like days. (Months afterwards, I made a comment about it (I never spoke about anything from that time very often, even though my family knew, the police had told them everything they knew)  about how she thought it was longer than just one night and all I could think of, was that it felt like it. During that time, I stayed awake, thinking and thinking, of ways that I could escape with my life intact. I tried a few methods, but it never ended how I had hoped.

At some point, he decided that he wanted sex. I said no, of course. But as he continued to pester with sentences such as, I will open the door and let you go as soon as I am done, or I will kill you if you dont, then I can do what I want.

I didnt say no, I just lay there, trying not to think, trying to space my mind away from it all, trying to slow my heart rate down as it felt like it was making a brewak away from my ribcage. It wasnt hard to get lost, everything hurt so much, from my muscles, to my neck, to my head. It was easy to get lost in the pain. But getting lost is differnt from freezing. I know why I did what I did, but I could have fought more, I could have kept saying no.

I did get away in the end, after I had been made to wash and change of course. And to wear something with a higher neck to cover the bruising that was begining to replace the red marks. A friend talked me into going to the police, but even at 16, the police officer who came, was distant and pretty much said, you have no chance of a conviction. It was only the persuasion of the person with me, that made me go through with the exam. I remember that day, even though I hadnt slept for what felt like days, like it were yesterday. I  remember, even in the police station, sitting on the floor behind the door and pushing myself into the corner. The room just felt to big and I needed the feel of the walls behind me.

They didnt know where I had gone when they came to look for me, looking through the open door, searching to where I might be, asking each other in the hallway.

These days, I can look back at it distantly. Dont get me wrong, I have never properly been with a person in a sexual way since, but the fear doesnt push as strong now when I think of it. I still have vivid memories, but they are unlikely to go now and I have learnt to live with them.

I remember a friend saying to me long afterwards, that she thought that I was making it up for some reason at first. That given my ages maybe I was being dramtic or something. But then, when he confronted me, that I just took on a totally differnt look, one she hopes never to see on anyone ever again.

That is what it remined me of tonight. I struggled with that for a long time, still do to a point. But gradually starting to come to terms with things. Stopping myself from playing the what if game. Stopped hating myself for things that I did at 16 so much. And although it will never go away, it will fade and become less of an obstacle for me. I think sometimes, I need to remind myself that i need to start forgiving 16 year old me,

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.

Change is in the air.

I have had 3 amazing months.
Months filled with everything I could have wanted and more.
Love, so much love.
Happiness
Achievements
Old friends, new friends.
Holidays abroad and holidays in the UK.
And most of all, very few hospital stays.

But, I can feel it in my gut, things are about to change.
I've lost my stamina.
In the past, I have picked up pretty well after surgery.
I know the rules, I know to keep moving, I know to breathe to deep.
But this time is different.
This time recovery has been slow.
I expected it to be slow to be honest, its one of the biggest ops I have had.
But its not that.
Its not even the complications.

On top of the usual surgical recovery, I have developed a new condition.
costochondritis. Basically inflammation of the cartilage in my rib cage.
It makes sense, the trouble is, nobody know if it will be permant or temporary.
The main issue is pain, getting comfortable at night is a nightmare.
But it causes other symptoms. Odd symptoms you wouldnt expect.
It makes one of my boobs sore, it sticks out and it aches and pulls.
But its not just that.

As I say, I am not being unappreciative. I have loved the last 3 months.
But change is in the air.

After spending a night in A&E unable to breathe, I was started on anitbiotics.
My chest is a mess. My doctor says its to be expected, spending so much time under anesthtic.
I have been started on steroids and a second course of antibiotics
But that is just the start.
As soon as a bed comes available, I am being admitted for a course of IVs
Hopefully it will help.

But the doctor did admit that I am now colonised psuedomonas and possibly staph.
Basically means, they will always live in my lungs now.
And flair up whenever they decide to.

But again its not that.
My bladder is playing up.
It took 3 courses of antibiotics to clear the infection
and I'm still not sure if it gone.
I cough a lot and at the minute I leak easy.
Not good when your lying in bed hooked up to machines.

The coughing has other side effects.
prolapses and as I mentioned bladder issues.
But I cant bear the thought of getting them checked over.
The thought of another clinic.
Another doctor.
I cant bear the thought of having them confirm what I already know.
Or to tell me of more problems.
I feel I am falling apart.

But once again, its not even that.
I keep mentioning 3 months.
I do look back and smile.
But there is more to 3 months.
My last trach lasted 3 months before the scar tissue built up.
And I have feeling this one is going to be the same.
I am able to talk more without covering the hole.
This means it my airway is blocking below the tube again.

Time is getting to be a problem again.
I have another tube waiting somewhere in the hospital for me.
That will give me another 3 months.
That should take me to the next surgery.
But what if it dosnt work.
What if the cartilage dosnt grow.
what if dies before I even get to my next appointment.

I have never been a whatif type of person.
Yet now I feel myself getting scared.
Scared of what I dont know.
Perhaps what is next to go wrong.
Perhaps, I am just tired.
Tired of everything.
Tired of things going wrong.
Just tired.

Its no one thing, it a hundred small things all rolled into one.
And there is nothing I can do to stop any single one of them.
Every answer just out of reach.
Every solution short of one step.

I have come so far
and I will ever be thankful for everyone who has gotten me to this point.
Be it friends, family, doctors, nurses, donors.
But the truth is, right now, the future grows less clear.
I can see myself getting weaker.
the last few weeks are taking their toll.
Maybe sleep will help.
But I am changing.
Life is changing.
evolving
change is in the air.
maybe good change
maybe bad change
But any change, is always accompanied with drawbacks and oppertunites.

Perhaps sleep will numb my mind to stillness tonight.
Perhaps I shall sleep more than a few unbroken hours.

pain and purpose

I dont know, I have been wording this entry for a while, turning it over in my head and rewording. Coming up with the right words and forgetting them soon after, coming up with hundreds more words until it turns into a a jumble of letters that make no sense.

When I  started blogging, my whole purpose was in hopes of find people with similer stuff happening to them. I knew it would be a long shot as things seem to never go the simple way with me. Along the way, I have met many many people. Some I have related to so much it has been like reading my words, some have had smilier things in their life, some have annoyed me from the start, some I have liked their attitudes and wordings of things, but soon grown aggravated when they moan over about the same things or kick up a fuss at small procedures that are meant to help. Many I worry about. What the future holds for them and how will they deal with it. I mean, if they cant undergo a simple outpatients procedure how on earth will they deal with a transplant when the need arises. The funny thing, most of these people are complete strangers to me and always will be. But some of them, I will never forget. Those are the ones I admire most and the ones seem to be the ones who keep getting taken away.

Maybe I am naive, maybe its due to my transplant experience. I spent a long time being bitter about transplant. Mine was a little different to most, and while others grew sick beforehand and watched their lives slip away despite their best efforts to keep in control of it. Then they went through transplant and suddenly everything improve. With mine, the way my mind tried to rationale, was that I was perfectly fit and healthy.I was 16, never take any medications accept the very occasional antibiotic, hadnt see a doctor in about 4 years. The next thing I knew, I got out of hospital after transplant and suddenly, I was faced with so much change. Doctors every week, stacks of pills, endless lists of things to adjust to it. It was a big change and I hated it every step of the way asI fought many daemons off my back. I lost my friends,my independence, my energy, my personality everything, all in a few short weeks.

I didnt like the person I had become and I didnt want to know anymore. I wanted to burry everything under the carpet and pretend it hadnt happened, go back to my old life and forget everything.

When I started getting sick with my breathing, I began reading about,doing research, finding other people wanting to know as much as I could.

I never really considered the consequences of this. But as time goes on, I see these people conquering great things, getting better and my heart beats with joy seeing them do the things they alway wanted. But, then something clicks and they begin to go downhill. Before I know it, sad news is passed on that they are no longer restricted by anything, that they have left this world, this pain and gone on to somewhere else.

Everything begins to hurt, to feel heavy. I may not have been close to them, but it still hurts each time some one goes.

I mentioned in my last blog about Bree whose blog I read having gone from us.
This sadends me, but more so out of selfish act.
I came across Breesj ournal a long time ago, I think through a transplant forum. I immediately fell in love with her writing, her style and attitude never ceased to make me smile and her happiness came across in every post. I knew that she had hada lung transplant, but could not remember the reason for this.

After she hadnt posted for a couple of weeks, which was odd, I went to check her blog and something caught my eye. In her about me section, she mentioned having had a lung transplant due to Bronchiectasis. My heart skipped a beat and my breathe caught in my throat. This is what doctors had been queering with me, this is what I had been searching for answers to and the best answers I could ever get, were right under my nose.

I knew Bree wasnt well and so I hoped for a speedy recovery for her, checking in twice a day just incase she had posted. I had thousands of questions going through my head that I wanted to ask once she was better. I hoped she wouldnt mind answering me, but from what she wrote, I didnt think she would.    

But now, I cant ask those questions. Her time is up and not because of the lungs. Sadly, the lungs she got worked brilliantly, but some mystery disease was causing her body to attack itself, especially the brain.

Its sad losing people. I know how fragile life is, I have had a lot of very near misses. The experimental surgeries promise nothing. But I know I must continue to move forward no matter how slow the place or how steep the incline. But, right now I guess, it just leaves me questioning the balance of finding people to relate to against the risk of losing them.



http://bree-theblogblog.blogspot.com Bree, I hope you are having fun and kicking some butt wherever you are now.