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.

Close but not quite

The title is in reference to where I am currently. I expected to be admitted and I have been, yet it was not in the imagined way. (this post was posted on Wednesday, but silly blogger put it in the wrong blog and I have only just realised.)

About 4 weeks ago, my chest doc said he would admit me for a course of iv antibiotics. As far as I knew, I was still waiting on a bed. I didn't chase it up too much as I know I get the most benefits from a 2 week add mission but I had my holiday to Greece planned.

I rang on Monday and somewhere messages have gotten mixed up. I was down for a surgical review as they are going to look at putting a port in my chest (a port will allow me to have better iv access, and but I will cover more of that another day.) so they forgot I needed an admission as well. After a lot of phone calls, finally I think it is sorted, however, I am once again on a wait list for a bed.

That takes me to yesterday. I spent most of night tossing about in bed and feeling generally ill. This is most unusual for me as usually once I am settled there is no moving for 12 hours. By 8am I had given up. I couldn't put my finger on but I felt rough. I often feel ill for one reason or the other, but this was beyond anything I have felt for a few years. I ended up with an emergency gp appointment though the thought of the effort involved in doing this made me want to scream. With a lot of encouragement I made it.

It was decided that it was another migraine, though it felt like more to me. I was given yet another type of migraine med as the last ones were not knocking it out and sent home to sleep.

By evening my temp had shot up, every part of me ached, coughing was agony and I could not keep anything in my body. Because I had spent most of the day curled up, and my breathing then began to play up to. I felt like death and I worried that things would get worse overnight. I just wanted to go to sleep, but my parents didn't think that was a good idea given how quick I had gotten ill. They have many memories of me going to bed with a cough and a slight temp, only to be woken up early in the morning with me needing urgent help with pneumonia.

They wanted me to go to a&e, but I couldn't stand the thought. My emergency department is in a horrible hospital that sends me loopy every time I go in. I wasn't in the best emotionally and so I threw a bit of a temper and refused. In the end we came to a compromise to ring my old ward and ask there advice. They told me to come over and they would get the on call doc to review me.

In short, they kept me in overnight and took me to theatre today. My temp seems to have settled and I have kept food and drink down. They cleared out my throat and changed my tube for me. The tube they changed to, after a bit of researching is longer than my usual tube, therfore it should fit through where the scar tissue is building up. It's temporary until my new tube comes in but should allow me to breathe better. The though at present it is very painful. I am doped up but that will ease of the next couple of days hopefully.

Tomorrow I should be discharged and then back to waiting for the add mission for iv meds.

Seem to go around in circles. Just odd, as I spent a full 3 months on this ward but have not been here for about 3 years. The room seems so familiar. Though they are nice rooms, very very big rooms.

This happened.

Things didnt stay the same last week. 

Tuesday, I didnt feel right, but I could not put my finger on why. I had had a pretty full weekend while my breathing was playing up. So Tuesday afternoon, I gave up and went to bed for a couple of hours.

When I woke, my stomach was a mass of red spots, that was spreading to my arms and legs. This lead to am emergency trip to the doctors, but not much came of it as we are still unsure what is causing it. The guess is that it is either viral or measels. I have been vaccinated, but I have also had it twice before, including once when I was 6 weeks old and should have had my mums protection.

The last few days have included plenty of sleep, the best way to escape the itch that plagues me all day and night. I have been taking lots of anti histamines to take the itch away, but I have taken to lying on the cold titles of the kitchen floor and using a bottle of baby oil spray that I keep in the fridge.

Today though, the rash has seemed to break a little. I find the more I move, the worse it gets. So I have stayed pretty still and it is begining to fade, which is great news. Plus, I am not meant to leave the house anyway until the rash is cleared.

But I have the weekend to recover. And next week is going to be a better week. I get my nebuliser on Monday. That has set me back a lot of money eekk. But if it means I can stay on top of my nebs and not take all day, then yay. Plus it has to be quieter.

Time for more sleep anyway. Hopfully by tomorrow morning, the rash will be gone.

What a week.

It seems like forever since I last posted here.
I guess life has been hectic.

Last weekend, I began getting short of breathe again and finding it harder and harder to tolerate wearing my speaking valve. I was going to London on the Monday, so kept putting it down being more conscious of my breathing and that everything was fine.

London was like a huge social event ha. I traveled down with a fellow patient, in first class, where we laughed and gossiped a lot. I was coughing a lot, which was kinda amusing as the people at the next table kept looking at me and eventually got up and moved further down train. My friend said I should cough some more so we could have the whole carriage to ourselves.

Booked into the ward and all my favourite nurses were on shift so it was more gossip before nipping over the road for yummy pasta and falling into bed exhausted.

Surgery went fine, they removed a lot of scar tissue, including a huge lump just above my trach, which explains why I was starting to struggle. (Icky pics comming up)

I also managed to get my trach changed to a silver one, which I am much more happy with. Its less bulky and generally easier to keep functioning.

This is the old one, how I had to wear it most the time.

And this is the silver one

So yeah, overall very happy with it.

I was not feeling to great the first day after surgery and so I stayed in a little longer than normal. I also got to attend my own patient confrence with all the docs which was pretty fun. But thats another entry for another day.

And so Saturday, I went out with my niece, where we tried on dresses, bought dresses, ate pizza, drank starbucks and watched titanic 3D. It was a pretty fun day.

However, sitting in the pictures, I began to feel odd, I kept having palpertations and believe me they had nothing to do with Leo De Caprio. Walking to the train station, I had to actully stop and sit and rest several times, which I never do, I push on. I was coughing so much, that it was a fight to keep my stomach contents where they should be.

I got home and just felt worse, which sucked. So i went to bed. My niece set up all my equipment and nebs.

But a few hours later, I was getting worse and worse and so it was decided a trip to A&E was in order. Not one of my favourite places.

Scared the heck out of my niece, hugged her and off we went, all the while mum complaining that I had done to much and my niece applogising her heart out for making me do to much.

A&E took me staright to resus and I was seen fairly promptly. After several failed attempts to put a cannula in or get blood, they eventually got a small amount, which was sent off. The doc then spent just over an hour trying to get some arterial blood, which was not to be. I hate getting artieral blood done as its rather painful and hard to get mine. With both my wrists not giving up a single drop, he headed to my femoral arteries. Which I hate and are just as bad. It basically means lying on your back, with a doc with his fingers digging in where your leg joins your body on the inside, so yeah, not a nice place, espcially not when you are coughing so much you need to sit with your legs crossed.

Eventually they managed to get some, but my breathing issues had settled down as quick as they started. My results came back showing infection, but no real reason why I was so ill with it. After a camera down my throat and much negotionion they decided at 6am that I could go home.

And that was my little adventure to A&E, where I swear yet again to say never again!!

I still feel rather rough, but I am at least breathing and just waiting for my body to recover from last week. My chest aches from coughing, so the painkillers are out in force, which adds to the crap feeling. So rest is my friend about now.

Le mother

I had a kinda mini argument with Mum today, its odd, but kinda shows me how differnt our views our and perhaps why we irk each other often.

I cant recal how we got onto the subject, but we were talking about the end of the year. I said its been a good year, to which she looked at me and, oh thanks! I said what? She said, I got Cancer this year. To which I replied, you survived cancer this year. To which she said, you dont know that yet, not till I get my next scan. To which I replied, well you look pretty alive to me and unless you drop dead within the next 24 hours, then you survived cancer this year.

I then continued with, there has been no unexpected or untimely deaths, I have been to theater 14 times with no real issues and gernally things are going ok. To which she kinda grunted and said, you hardly had life threatening surgery. To which I replied, and its hardly minor surgery. For a while, I have no viable airway, my airway is open to the world and there are a lot of risks to it. To which she kinda made one of those whatever faces and walked away.

It just makes me think, how differnt our thinking is these days. I do wonder where I get my thinking from if the person I spend most time with is so differnt. Or does it then become a case of, well I dont want to turn out like that so I will try hard to be the opposite.

It also make me think about how I put things to my mum. I do downplay things such as surgery, always sugar coat and higlight benefits whilst skipping risks. Is it wise. Im not sure. On one account, its almost as if she belittles some of my issues as pettite almost, perhaps that is my fault. But if she knew more, if things were said straight, what would happen then? I think she would stress more, get more depressed and so on.

But then, my head goes back to the summer, when I thought she was begining to understand. A few times, it seemed like whilst she was ill, she sort of knew some of the issues I struggle with, and when I mentioned that I was still holding on to hope that I wouldnt be ill forever and therefore wouldnt need to live close by forever for her to look after me, she teared up, as if thinking dream on.

Its not that I want sympathy or pity or even think my life is tough, its just that I never seem to know where I stand with her or how she views me. One day, she is telling me what I cant do and that I need to look after myself more, the next day, that I am not doing enough and should be doing other things  at my age.

I know I have always had difficulty with my sense of self, I have no idea who I am, which is what has lead to some of my issues in the mental health setting. I cant help but think, that perhaps mum has the same issue, maybe thats why I feel the way I do.

I dont know, I guess I am rambeling. And whilst I do think I am a lot differnt from my mum, I also see a lot of the parts I hate most about myself in her. Espcially the competitvness, even in things that shouldnt be a competition. I know she spends a lot of time compering her ills with my ills and on a discussion with Dad last month in regards in to travel insurance, she near took his head off for suggesting that I am sicker than her. I am just not sure, at this point, how I can persuade her to look at herself as not being sick. She has had the surgery, she has done chemo and radio and the only thing now is a anti cancer drug once every 3 weeks. She should be improving, moving on and getting her life back. They would expect by now, for the average person to be back at work, back at life and moving out of the ill catergory. Yet she seems to be clinging to it. She has a tablet she has to take once a week. You take it and for the hour afterwards, you cant lie down and you cant eat or drink. To my mind, it wouldnt be a problem, you would take it, then go shower and dress and such and by that point, carry on with normal routine. But to her, its this huge deal. She tells everyone how hard it is and how much it gets in the way. Really, if your going to complain at something like that, then its nothing.

I'm just bitching and rambeling at this point with no real purpose. I just wish I could wave a magic wand and somehow know here I stand and who I am. Just finding things hard with her at the moment I guess. I frequently seem to find my Dad and I rolling ours eyes behind her back. But i guess she is just as hard on him and that hurts too.

At this point, I want to run away. I want to be well enough, to go escape, to run far far away start fresh and build my own life and my own self and know exactly where I stand in the world.
One day.
Next year.
This year, I am going to get well.
Next year, Im going to rebuild my life.

Wallowing

It feels like I have written here in forever, in reality its not that long.

I have been avoiding here a little. Wallowing perhaps.

Sometimes, I can look at things and I can say, wow look how far I have come. Look at all the amazing people I have met from being ill. Look how much I have gained.

Other times, I can look at things and feel nothing but bitter feelings, anger and resentment. Its hard not to picture the places I might have been in life had I not gotten sick. If I had just gotten sick from some sort of natural cause, would I have dealt with it better? It feels sometimes, that its harder, knowing that it wasnt natural, it didnt just happen, it was the result of one person. I think that also makes the psychological side harder to deal with.

The last week, has kind of been differnt again from the above. This week has more so been a mood that makes me ask why things are so unfair in life. Why do some people and families get to breeze through life without a care, while others seem to face continual set backs.

There seems to be a lot going on at the moment. Lots of things and people are crumbling, lots of people close to me falling apart or getting sick. Of course I worry about them, but at the same time as worrying, I am trying to hold myself together and appear strong for them. Its not fair if I am the one always sick or struggling if they get pushed out. But of course, covering up is never an easy subject.

I guess I have had a few scares and wake up calls this week. And my reaction? To shut myself away, to ignore everyone and block everyone out. To curl up, within myself.

The last few days I have been in a very dark place indeed. Looking back, its kinda scary to how bad things got at one point. I dont know. Words are hard at the moment. It feels like there is this big black hole inside me. Somedays, it just sits there pulsing, so I can feel it, letting me know its there. Other days, it grows, it feels heavy and weights me down. When it gets to heavy, I instead, turn over and wrap myself within it. To snuggle down with it, and pepping out, is like walking into bright sunlight.

I know there is hope, I know how well I have things, I know that I am the fortunate one and that others need me right now. But sometimes, logic dosnt make sense or my heart dosnt want to follow. Its then when things get dangerous.

At the moment, communication, just seems to not be worth the energy expenditure that it needs.

The Royal

SoI vanished for over a week, and what a week it has been.
Last time I posted, I had started some anti biotics as I was feeling unwell. I went to bed and slept well, though did wake up early to mum shouting at me to do my nebs as I was coughing a lot. I felt even worse when I woke up so I checked my temp, and sure enough it was high again at 39.2. I was starting to worry, as the temperature was so high and I felt so rough with it. Of course, me being stuborn, was doing the whole, I have meds, I am fine and not getting any further help. So I tried to sleep it off.

By 5pm, I literally felt like I was dying. Everything ached so much, I was shivering despite having many layers on and although I felt the need to cough, I wasnt, partly due to hurting so much, but more so because my chest was backing up. I checked my temperature again, and it seemed to be going up and was at 39.8, despite having taken painkillers an hour before.

I knew at that point that I needed more meds and I really didnt want to go through the night incase my temp rose anymore. From training I remember that 37.5 is a temp, but once you get to 40, you run the risk of brain damage and seizures. So off I went to the Royal Liverpool Hospital. Now anyone who has known me for a while, knows how much I hate that hospital. To be fair, its about 3 years since I was last in there. But generally its unclean and the staff dont know what they are doing. I had no choice at this point and so off I trundled to A&E.

As soon as I stepped foot in A&E, I was moved straight to resus as my breathing was very noisy. After sometime, I saw the doctor who ran a load of tests. I had a fast pulse and high blood pressure, but my oxygen sats were remaining stable at 96%. Although they were not low, the doctor decided he wanted to check my arterial gases anyway. Ouch!! My artieries are well battered and deep, it took him a couple of tries and he hit a nerve a few time, but eventually got it. Well, all my gases were out of the normal range, meaning I was storing Carbon Dioxide. This along with the temperature was why I was in so much pain. I was started on a couple of differnt IV anti biotics a load of new nebs and some painkillers. I was moved to an assessment ward.

They expected the meds to kick in pretty fast but 24 hours later, my temperature was still jumping every 2 hours. There was also difficulty keeping an IV in as my veins were shutting down within an hour of stopping the IV. I was changed to oral anti biotics and given tons of chest physio and nebulizers every hour.

I dont deal well with small amounts of sleep so being woken constantly as well as feeling crap, began to wind me up. The nurses were busy and so when I started to feel rough, I was unable to do much. I told them my temp was going up and that I needed painkillers and a drink, all of which I kept getting told, in a minute. I curled up in agony but then began to panic. My throat was dry and felt like it was closing not to mention my muscles were begining to ache more.

In the end, I burst out crying at one of the nurses. She was a little shocked, but then told me that I didnt need oxygen as my levels were fine according to the machine. At this point, I wanted to scream that my levels where fine last time and in A&E, but that wasnt why I was on oxygen. In the end, I demanded to speak to a doctor, as I was getting scared my airway was about to shut down again.

The doctor didnt really listen and in the end turned around to me and said, well there is no mircle cure to fix your throat, you should just learn to get on with it. At this point, I truly wanted to scream. I was not looking for a miracle cure, I was looking for the correct meds, and for someone to keep an eye out and keep me breathing should my throat go on me.

Anyway, long story short, they wanted rid of me and so moved me to a respiratory high dependancy ward. This was much better, it was clean, the staff knew what they were doing and I was able to get some sleep.

It took about 5 days, for my temperature to settle down, but then my cells in my body began to play up. The CRP which shows if you have an infection, should be about 5 or below, mine was reading at just over 80. Then, my immune system took a hit too. As I began to get better, my infection fighting cells, dropped right down to almost zero. I was immediately put in isolation and everyone who came in had to be gowned and such.

I was not allowed to leave my room, until the cell count came back up to closer than normal. I had bloods drawn daily and a load of tests done to ensure that there is no underlying reason why my count dropped so low.

I still feel pretty crappy and keep getting stabbing pains in the bottom of my lung that has had surgery. But now, I just need to work on getting better again. Its amazing how much fitness I have lost on this admission. Usually, I work hard to keep moving, but feeling so rotten and being in isolation, meant that I didnt really. Simple things, like tying my hair up today, left my arms aching like mad. So thats my next thing to work on.

Not to mention that I now need to rearrange my admission to London as I missed it this week.

So that was my exciting week, spent in the hospital, again, bored out of my mind. I also missed my mums 60th brthday. I was discharged yesterday, and now I am going to enjoy curling up in my own bed and sleeping right through. No sill early morning breakfast wake up calls.

3 weeks.

Friday was a good day, in the sense that I felt exhausted, but had reason for it, instead of feeling exhausted for no reason. I have however paid for it over the last couple of days.

Saturday, I just felt so drained from the moment I woke up, I couldnt even be bothered to eat or do much. Today, I woke late, had a bad night last night, once again not done much. Ha pretty much tried to look busy and a few hours after I woke, I was struggling to stay awake.

Last night, my dad woke my mum up at about 4 am to come in and check I was ok, she also came and checked on me at about 7 am to make me run a neb as I was coughing so much during the night that I kept them both away.

Tomorrow, I travel to London for admission and another ML (microlaryngoscopy)  and laser, fun fun fun. Hopefully this will only be a day admission, though dad keeps betting me that it will be at least a couple of days!

I am ready for this. I think that I have lasted longer with my breathing this time, as last time as well as laser, I had dilation (ouch) though mum thinks I am getting worse each time they operate. I guess I have to wait till tomorrow. I know I have been noisier this time.

Tomorrow is going to be a big step I think. I want some answers, I want to know where things go from here and what the size of my throat is now, compared with normal. I think plans are also going to have to be made. I cant keep doing this whole surgery thing. My body is not coping with it. It has been 3 weeks since my last one, one week recovering while feeling crap, then a course of antibiotics for a unknown infection with temp spike plus a bad cold on top of that. And now, tomorrow, my immune system will take another hit, from steroids and anesthetic. My immune system is fragile enough, it cant keep taking these hits.

I still remain hopeful. There must be more things they can try, more ways to fix things. Things have to improve from here right?

Introducing...

Christopher Bear the Second.

It would be rude of me not to give you the fully story.

When I was a child, I fell in love with a bear, the only problem was, he did not belong to me, perhaps that is why he was so attractive, always want what you cant have right? This bear looked identical to the one above and he was a christening present to my brother.

I of course kept stealing it until he and my parents finally agreed that I could have the bear and I named it Christopher after my brother. Well Christopher Bear went everywhere with me and I mean everywhere. Mum used to have to wait till I had gone to sleep to put him in the wash and sneak him back before I awoke. 

He had to have a lot of 'surgery' through his life for things like arms and ears falling off. His heart on his chest had completley worn away as had the majority of his fur. But I loved him dearly. At one point, while driving along a busy road in France my brother was tormentng me and was hanging him out the window until he accidently dropped him. He kept whispering me to keep quiet about it and he would but me a new one as soon as we got home. I of course began crying so mum turned around to see what was up, cue a 15 minute drive back down the road to try and find him and my brother getting a telling off.

One day, we were at a car boot sale and I found an identical bear, it was the first time I had seen such a bear and i of course bought it. Mum tried to make me swap the bears so that the real Christopher bear could have a break and not wear anymore of his fur out. He didnt get swapped, the original bear felt more loved and cuddly. 

Anyway, when I left home, Christopher bear of course came with me. This was a big mistake. 

Next thing I know I am in ICU and I want my bear!! I got real grouchy over it too. They even rang my mum at about 4am once asking which bear was christopher bear as they couldnt get me to settle as I wanted him. haha. I blame the ICU psychosis or perhaps the liver failure stuff, but I turned into a rather large 3 year old during my time in there.

So for the last 7 years I have been mourning the loss of my bear! I still miss him and his grubby baldy fur (RIP Christopher Bear)

Last week when I was not feeling well, I had my niece staying in our spare room, I was tucking her in and found the bear I bought at the car boot. He is an impostor, but I have to face it that the real bear is never going to be seen again. So Christopher Bear the second (CB2) came and comforted me and snuggled with me last week. So for now, we are going to work on our relationship together.

I am in one of those places, where I miss sleeping with bear (that sounds rude and I mean it in an innocent way) but do I really want to get into the habbit of sleeping with a teddy at my age?

Oh well, I will be sleeping with him tonight as yet again I need comfort.

I am getting fed up of reporting in here how crap I feel, but oh well. Yesterday, I kept going dizzy all day and generally feeling not right. This morning I awoke feeling so blocked up that I was talking through my nose and sneezing my head off. Tonight I am going to bed with swollen glands.

I dread the morning as a blocked nose usually results in me sleeping with my mouth open (attractive arnt I?), which leads to a dry throat, which often swells and causes pain as well as clogging up my chest. Blah. 

What I am more upset about, is I am meant to be taking my niece out for halloween tomorrow and yet all I want to do is curl up my duvet with a hot drink, but I bought like the best wings ever!! and I want to get dressed up. So I have decided that if I feel the way I do now, tomorrow, I will go, if I feel worse, then I will have to cancel as being out in the cold, really isnt a good idea if I want to be well enough for my next admission. 

On that note, meds, vaseline my nose my nsoe as it glows like rudolph tonight and then bed with my bear. Night night.

ahhhh bliss

I had a real shower!!
Now you are probably thinking eww have you not had one before, well no, not a real one.
After surgery I had to keep my chest dry, my right thigh dry and my neck dry. Well, the dressing has eventually come off my thigh, so it was only my neck that I had to be careful of, so I jumped in the shower.

It was hard work, but it was bliss. Hot water washing some of that tension away. Up until then, I had been living on strip washes, which are fine for actually getting clean, but not feeling clean. The shower, just felt so much better. Granted there was no shower chair, so I did find myself sitting on the floor for a large part of the shower. I had to keep getting my breath back between each task and tilting my head back to wash my hair, was a little awkward.

I came out complete exhausted, but feeling a heck of a lot fresher. Not only that, but the shower helped with my circulation. My cheeks had a lovely pink flush to them instead of my grey/white look I have been wearing lately.

Its strange when I think of how much I have changed over the last year. When I was admitted last year, my hair was as short as could be, I lived on the computer and the only think I craved whilst in hospital was more time to spend on the forum I use. I had always been a tom boy, didnt care for looks and generally lived in oversized t shirts and combats. Now however, the thing I am missing and craving most is things like my hair gel and my make up. I dont think that it is because I am vain as such, more so that I like the confidence boost that looking better gives me.

The biggest thing I have always said is that I want to be as close to normal as possible. Least amount of fuss and special treatment that I can live without. Things like I never told anyone I was deaf as I didnt want them to treat me differently. Same with things such as breathing problems. Of course it got to the point, where you could tell and I couldnt hide. That was when I couldnt live without the special treatment as I couldnt keep up.

Things are the same now. I dont want that gray pallor of a sick person who never sees sun. I dont want people to look at me and the first thing they see is a sick person. I dont want sympathy just because I am deemed as sick. Its like when my brother got back in touch with me, the night before I got my trach. Dont get me wrong, I miss him a lot, but the fact that he only contacted me that night, then when I was out of immediate danger he didnt get back in touch. I dont want people like that around me. It happened last time, when I was first stabbed.

Loads of people came to see me in hospital, to get a look so to speak, but didnt bother again after that. People who I had not got along with in school, ones who I had kinda had a 'I'll leave you alone if you leave me alone' type of relationship with, were suddenly crying for me and wanting to visit. Of course it didnt last, because there was a reason we were never close to begin with.

On a totally different note, I seriously want to kill the girl opposite. She isnt in because she is sick, she has had cosmetic surgery so its all her own doing, she hasnt had to deal with any limitations and such. Yet she never stops moaning!! Its tiring just listening to her. She tells the staff at least once and hour how uncomfortable she is and how much pain she is. She even called a nurse last night to turn her light off, when the button is right next to her bed and I heard her reaching further than that to get into her cupboard. She then spent half an hour whining about how none of the staff have time for her and they dont care about her. The staff spend a lot of time with her, but she isnt helping herself. Refusing to get out of bed, not having any meals and worst of all munching when she thinks no one is around and then you hear her throwing it up. The nurses had to stop her the other day from sticking her fingers down her throat. She says she is tired, but she was up till 1am this morning on the phone. My sympathy for her ran out a long long time ago.

Fingers crossed they are kicking her out to day. Though it is getting a little old now, watching people being admitted and discharged whilst I sit on the sidelines.

But on that note. Surgery tomorrow!! eeeee.

Baby food

I have been staring at the screen for 10 minutes wondering how to word this entry or how to start it. I have no idea what my head is telling me today.

There has been good aspects to the last few days that I have enjoyed, there have been frustrating ones when I wish I had my voice to speak up or I had the courage to stand up to people and voice my opinions. Mixed in with all this there is an underlying fear and heck of a lot of denial. My brain feels like baby food, all differnt flavors, colors consistencies all mixed together. All going on together and yet all the tastes are there.

The doctors have written me up for painkillers again. Volterol and Codiene. I asked for painkillers they asked why. I said (yet again) that I am coughing that much that every morning I wake with so much pain in my chest, back and shoulders. They didnt bother examining why suddenly 2 weeks after surgery I am getting such pain or having such a bad cough, they just wrote up the meds.

Yesterday a friend of mine was admitted to hospital. Its been a long time coming, but that dosnt make it any easier. I just really hope that this admission actually helps her and gets her the support she needs to get through this rough patch and out the other side. But of course, I still wish there was more I could do. Find the magic words that make everything better. I hate to see others suffering, especially sweet, lovely nice people like her.

The nurses are being nicer to me now. I think they see me as the easy patient now as there is very little for them to do. A lot of the nurses and some of the doctors even wave on the way past or have short conversations whilst on the go. But I still get pissed off easily. One nurse who was being nice to me yesterday
left me very annoyed at meal times. My friend Cam was visiting as she has been everyday since my mum had to go home. It breaks up the day and allows me to socialize. They were bringing dinners round and in my bay at the time there was only me and one other girl in the bed opposite me (we shall call her moaner.)

My friend got asked to leave the bay whilst meals were being served, which ok, is fair enough if thats who the ward operates (though its the first time she has ever been asked to) but moaner had 2 people with her and neither of them got asked to leave!! To me that just seems unfair.

But anyway, we christened her moaner as that is basically what she is. She had surgery the day before so it wasnt even like it was that day. But al you could hear was moaning and whining and she even called the nurse at one point to pour her a glass of water, which was pathetic as I had heard her opening the drawers in her unit which was further away than the water. She was complaining that she didnt have enough pain relief even though she looked stoned and kept falling asleep mid conversation. She has told the nurses she is in to much pain to eat or do anything, but when no one is around all you can hear is the rustling of sweet and crisp papers. Gah some people annoy me. I do feel for those who have been to surgery with general medical conditions, but hers is technically self inflicted and is cosmetic. Oh well she has been told she is getting discharged on Sunday, but I bet she hangs around till at least Tuesday.

This morning has probably been the most mixed emotions. The last few days, I have found that I have been getting more breathless. In true Kim style, I have been ignoring it. You never know if you ignore it long enough it might go away :) But anyway, I didnt sleep last night as I kept waking up gasping. At one point I sat bolt upright for about 20 minutes as I felt like I literally had to suck the air into my lungs. I contemplated calling a nurse, but in the end settled for putting some saline down my throat having a good cough and going back to sleep.

I had weird reams when I did sleep to. Something about I had been hacking and coding something to do illegal things with it. However, I had managed to unleash a virus type of thing, that spread to humans. :/ Those who had it, basically had to be killed, including my elderly neighbors, which was sad. The government thought they had control of it then and al the hyper died down. But then it suddenly came back and infected nearly everyone. There was one building left where they thought it hadnt infected and they were working on securing it, when suddenly one person started showing symptoms and the whole building had it and yeah. Very odd.

So this morning, I was meeting a friend, so I got up early to run a load of nebs in hope of clearing my chest. A few days ago, I could potter around the bay the bay and such without getting too out of breath. This morning though, I bent to get my stuff out the locker which took about 2 mins and I literally had to sit down for another 5 minutes to catch my breathe and stop going dizzy. Even moving from one side of the bed to the other, I would feel I couldnt breathe. I coudlnt get the air in and out of my lungs quick enough. When I got finished in the bathroom, I noticed that my nails had a blue tinge to them. Again, I chopped it down to being psychosomatic and thought perhaps I am just whining as I have had a bad night and I am getting fed up. But my friend commented this morning that she has noticed that I am getting more breathless the last few days. Frankly this scares the hell out of me.

If my breathing is getting worse while I still have the stent and trach in, what hope do I have next week when it comes out. If I am getting more breathless, it has to be either below the trach or my lungs. Neither of which are a good sign. My lungs are crap, but not that crap and it cant be an infection as my obs are all stable.

I am not sure where this leaves me. I can tell the nurses but the first thing they are going to do is look at my oxygen saturations which are fine. But my sats are always fine. I mean I went into respiratory arrest and still had 100% sats. I hate this feeling of uncertainty and I am holding back the tears. This surgery needs to work! And all the signs are pointing towards it not having worked. I have been positive and I have done everything they have told me. I have followed the routines, I have rested, I have pushed myself and I am trying to remain mobile, but its so frustrating when your body dosnt agree.

That being said, this morning, I felt as normal as I have felt for a very long time. I was meeting a friend for breakfast. Some people flourish with routines, but not me, I feel much better without a routine and with different and spontaneous things. So we decide to go for breakfast in the hospital. I got up and washed and kinda styled my hair as best I can without gel. Then we went for breakfast. It felt good, kinda normal, kinda what you see people doing in films. Getting up and ready of a morning, meeting for breakfast and a gossip, then going seperate ways about your own daily tasks. Yes, mine did start on a downer with my breathing and the rest of my day will be spent sleeping to recover, but for that hour, it felt good, I felt normal.

Its strange how you can feel so crap yet do something to feel good. The crap dosnt vanish of course, but for a moment its not at the forefront of your mind. Its not defing you and who you are and what you are able to do. I dont ever want to be defined by an illness, but it gets so hard not to be sometimes.

Bad Day

Today I planned to come and continue on my last weeks 'adventure'
But today has been a bad day and so I can not post with the vigor I wish ti enclouse.

Today, I have been rocked out of my safe cocoon.
Pain that comes and goes, but when it comes, it comes strong.
Its not in any of my operation site, its lower.

Trying to manage it, is it the pain meds causing it? Will the pain meds help with it?
Instinct tells me to wrap my body around the area. Yet that brings more pain from the rib.

nausea
coughing
pain
vomiting
Havnt eaten.

Begin eating light
It stays down and things look good
tea comes
One bite and the pain is back
curl up chest hurts again even more since vomiting
Mum makes me comfortable, fixing my pillows
Nurse comes with medication.
Deep breaths we can manage this probably just wind.
coughing
coughing
so much coughing

Hot
cold
hot again
Temperature reads normal
Pulse a little high but nothing to bad for my normal.

Mum goes home.
pain eases a little
Try to sleep
not happening
Put a film on for distraction.
coughing again

Need to stay flat for pain.
nausea again
sight of tablets makes me nervous.

nausea
vomiting
pain
No idea where it all came from, i havnt eaten that much in hours.

Another wave knocks me sideways.
Injections
Try to ease it
I need to settle my tummy to get the meds to stay down.
coughing more
pain increases again

Make this stop.
Why is the path never straight.

Bury down into bed
throw off the covers
take off the machines
I need simple basic sleep.

Is this just a bad day
or a bug on its way
bloods tomorrow may tell more

Its hard to describe the pain with no voice
Its hard to get people to listen that its more than a little sickness
Let me sleep tonight
enough pain

urgh

I dont think that I am going to be able to make a factual style post tonight :/
Which kinda sucks as I was enjoying making them.

I hate to moan about how I am feeling all the time, but, it does seem to be filling so much of my life at the moment and defining what I do.

I have been feeling under the weather for a couple of days but I was doing the whole, if I ignore it, it will go away style thing.

I have been feeling cold and tired mainly. I know there is some type of infection in my trach site, again! I told the nurse this at my tube change on Monday, she said it looks fine, but I know that it isnt. I have gone from needing to change the dressing every sort of 30 hours to now needing it every 10 hours. It dosnt look to bad because I changed dressings and started to use the wonderful duo derm on it. That stuff is like a second skin and does wonders, but I cant use it for more than a couple of days as I get really itchy and rashy and ick. So anyway, I insisted she swabbed it for me and sent it off. No doubt I will get a phone call with the results in the next couple of days. (I think cultrues are about 5 days, so sometime next week)

Anyway, I now think, whatever was/is in my trach site has gone onto my chest. Coughing fits seem to have increased a lot and it looks nasty. Plus I always know when my chest is blocking up, when I need to double the amount of tubes I go through. I had gotten down to one for a night and two for a day. Now however its 2-3 of a night and 6 of a day. Charming huh.

But tonight, I just feel so drained. I was so tired last night, I was asleep by 2, which is fairly early for me. My alarm went off at 11:50 and I couldnt wake up. After hitting sleep a couple of times I eventually woke at 12:20. Could barley keep my eyes open all day. It got to tea time and I just sat with my plate staring at it. I felt to tired to physically move my arm. I had a few mouthfuls, but then nausea kicked in. I kept trying for a bit more as I often feel sick when I dont eat, but each bite made me feel worse, so I gave up and curled up for an hour.

Perhaps its the painkillers. I started with real bad lady pains last night, that I dont normally get. But then, perhaps my body is just objecting to things at the moment. My voice feels like its getting quieter and I know I am really having to struggle and force it out at the moment. Which of course results in headaches from the pressure and lack of oxygen.

Perhaps im just in a moany mood.

But tonight, I think I might put a film on and get into bed.
Sorry for suck an icky post.

two steps forward, one step back.

Or is that one step forward and two back. *shrugs*

So, im beginning to get a little bit excited at the prospect of Monday. Tickets are booked. Train leaves town at 9:48am and gets into London at 12. (cost bloody £52 each though stupid train) Then coming back we leave london (Euston. Never been that station before)  at 9pm and get home at 11:30pm. (that was only £10 for 2 tickets yay)

The appointment is 2:40 I think (need to check that) and the nearest station is kinds cross and then a short walk. hmm what to do with all the other time. Obviously get food, but where. hmm might take my mum to Covent Garden after the appointment to get some tea and a nose around the shops. Ill have to have a think and plan somewhere on route for dinner. eeps I cant wait.

Then comes the descsion. Take my small crappy handheld camera or my big proper camera. I have to take all my meds in there original boxes so I suppose I am going to have to do with a back pack so might as well take my big one. Meds are going to take up enough space, wonder if I can be a real tourist and take my tripod too.

Anyway, thats my positive bit.

So my surgeon said he would send me a copy of the refferal let that he wrote so that I could chase it up. Well, I got this today and me being me, I was egar to open it and read all the gory details. I have this thing when I like to compare to others, suppose its in a way of recognizing that Im not actually lying. I have this huge fear of going to the doctors with something and them telling me I am lying about it and they dont believe me. Even after having a transplant, I was scared my doc wouldnt believe that I had needed it.

So anyway, I was reading it and found it intresting to hear about the different sizes of stenosis I have had and the types of stents they have tried. I was happily reading it until I reached:

This patient has difficult venous access due to server cushings syndrome and obesity.

Ok, so I knew I had bad access asI had to virtually always have hickman or central lines in but was told it was due to my veins being accessed so much that they had collapsed. And of course I knew I was obese. But I had no idea about cushings. Why wasnt it mentioned. I knew the very basics about it, that it causes psych problems and is basically to much cortisol (a steroid) in the blood and that it is a very rare disease.

A quick look on google tells me that it can cause weight gain, tiredness, osteoporosis, and server mood swings that can often present as a nervous breakdown. So is this what is causing my depression? Could this be why I couldnt cope a while back and ended up an a psych ward? Is this why I sleep all the time and have no energy? Could it all be down to this disorder?

So I looked at causes, which kinda unnerved me. The main causes are tumors, either cancerous or begnine, well I know my anti rejection meds can make me more prone to cancers, but I thought the main types where ovarian, cervical and skin, but my mind is in overdrive.

So I go on to read a little more. First they have to find the cause EG: where the tumor is, its most likely on the pitutry gland, which is in your skull. It is often removed, by drilling into your skull through your nose or gums and remove the tumor.It maybe nesscary to have a skin graft after the op. You may also require chemo or radio therapy. Plus you may also need steroids for life.

Tablets for life I can deal with, god knows im on enough of them already. But all the other treatments? Could I really handle them? Would I really need them? The way he wrote server cushings, kinda makes me think that I will need treatment. But I still have to question why I wasnt told about it? And how they found out I have it. The only way I can think of would either be bloods or a 24 hour urine last time I was sedated in ICU.

I dont know, I have so many questions about it and no one I can really ask any time in the immediate future. So my head will just keep exploring the possibilities and looking for correlations.

I just really hope it dosnt interffer with this appointment on Monday. You know, if they turn around and say, oh get that sorted and then come back to us, I'm not sure what I would feel then. Suppose only time will tell.

Double standards

Advanced warning: This is a pissed of uber annoyed post and will probably contain a fair bit of swearing. Oh what fun.

I am fucking fed up of your bloody double standards mrs oh so fucking perfect!
I was sick, from Thursday through to Wednesday. However, I did not moan, I got on with things. You had a right nark on with me on Sunday because it was mothers day and meant to be your day and yet I was being lazy. (It didnt matter to you that I felt absolutely rotten and it hurt to move or do anything) So I did what I could. I went to the cemetery even though all I wanted to do was curl up. Then when I sat down to recover for like 20mins you start kicking my possesions around 'because I shouldnt dare have anything of mine downstairs!' I was basically told to suck it up and get on with things when I was unwell.

But then you pick up the same virus from me, as does my niece. My niece, like me gets on with it and dosnt make a fuss. But you get, and its the end of the fucking world! You had to go to bed very early, then bring in a clear basin that you puked in to show me how sick you was. (Yes at the time I was still throwing up myself but I didnt bother taking the time to show you... mhmm why did i do this? maybe because im not a sick twat!)

So then you lie on the couch all day and cant possibly move, not even to get your own drink (Bear in mind if the illness progresses the same, this is the day I was being told off for not doing enough) Then in the evening you were offered food but said you would get something later. Then you go to bed in a sulk because dad didnt offer to make you something to eat later on!

All day you had go at me, that I didnt have to stress so much about getting dads tea done and stuff because he is perfectly capable of doing it himself. Then the next day when I didnt do much, you told me off because dad has been working all the hours and shouldnt have to come home and do anything in the house! Make up your bloody mind!

You tell me I am lazy and shouldnt sleep so much. And then when the doctor asks, you tell her that I need my sleep because my nights are disturbed. And oh joy, the doctor told you today that if oyu didnt begin to feel better by saturday to not go back to work. Gee thanks Dr. You know my mum, you know she will milk this for all its worth. So now it looks like I am going to have to put up with her all next week to as i bet she stays off.

Mum said something before in the car. And I mentioned that we had the same thing so it will probably run the same course and if anything hers should clear quicker than mine as she is healthier than and with a proper immune system. Her reply: But I have been much sicker than you. I just looked at her. And she started explaining about throwing up and such. I just said... oh right, I didnt have any of then? I must have dreamt it. Just because I dont bloody go on about it permanently dosnt mean I dont have.

Its like the other day when a doctor was going on about how high at risk I am from cancer due to my medications. We come out and mum goes, yeah your probably about the same risk as me now, because I got sunburn as kid!! FFS stop comparing, its not a bloody competition to see who is the fucking sickest. Because to be honest with you, you can be the sickest! You can take all my pills and go through all the surgeries and procedures and the trouble doing things and everything that goes with it!

Argh. Majorly pissed with her!

Oh and then she sees that I have just taken my bedding straight out the tumble dryer and am folding it and she starts having a go at me because its creased and its never creased when she does it. For one its bedding, I dont really care if its creased! And for 2, what the fuck am I suppossed to do? Iron it before I put it in the dryer then fold it up all nice and ask the dryer nicely not to toss it around to much. Fucking get over it loserhead!

Im on a slippery slope right now.  I gave up my 2 months free. I dont want to be free anymore. I miss the control and all the other feelings of release that come with it. Its funny, I was looking at pics earlier from a time when I was a mess and causing a pretty bad mess of myself. You can see my hand in one of them. With perfectly manicured nails all painted and shinny with the french tip. Good how you can be totally falling apart, yet on the outside, everything looks rosey. Time for a relapse I think. I still have it in me, I doubted it at one point but I know its still there.

The other day

So i guess I owe a kind of update thing on this. I meant to do it yesterday, but im sure judging from my post you figured I wasnt in the best place for updating. But ive been out today and im a little more chilled once again.

I last gave a proper update on Monday after having been ill sunday but magically got better. Well Tuesday morning came and I thought if I get out for a few hours again, I will take my mum and dad out to dinner and then visit my sister. All well and good but me and plans dont mix.

They woke me at 7:30 to do my obs and everything was normal (well normal for me) at 7:45 they came to flush my line and take some blood (why they have to do it so early I will never know) anyway, they didnt manage to get any out of my line but said that the doctor would come and do it shortly.

At 8:00 the doctor came in armed with a syringe ready for an easy task of taking blood out my hickman line. However, she found my just getting up to get my dressing gown, as I felt cold, within minutes (and this is before she touches me) I start violently shivering and curl up in bed. The doctor takes me line and proceeds to flush it read to take bloods. Suddenly I get this horrible intense throbbing back pain, which pretty soon moves to my head and neck to. All this while being supervised by the doc. She orders the nurse to take my obs and my heart rate as shot up and temp had gone up to 39.5. (Remember that this is all in less than 20 mins)

She was with the doctor last time when I arrested on the ward so she keeps asking me if its my breathing and if i think my throat is blocking up again, to which I say no its just pain and coldness. Oh they also strip me of sheets, blankets, dressing gown, socks and open the window as wide as it will go, all the while im violently shivering still and trying to curl up into a ball.

They run some iv paracetamol through as quick as they can, and then a high dose anti bioitc and some other pain med that I wasnt really listening to as I was grinding my teeth trying not to cry. So yeah she called in another doctor who said to just monitor me for the time being. And oh so slowly the pain began to pass. I felt so weak afterwards that I had to ask a nurse to escort me to the loo.

So they decided that it was my line that was infected and that I would have to go to surgery (so had to stop drinking and become nil by mouth) to have it removed and cleaned and a new line put in. I would be needing anti biotics for a few days so i would need some sort of IV access. My bloods came back and my white blood cell count was like 1.4 (which is dangerously low) it bascially meant that there where no cells in my body to fight any infection that I might have. So I was put in isolation and everyone had to put a gown on to come in and see me.

Went to surgery to have my line removed and the anesitist refused to put another semi permeant line in while my cell count was so low as he was afraid I would just get sick again so he just put a cannula in. Its odd going to theatre with a trachy in. They dont bother with the whole IV meds to put you to sleep, they just attach you to the breathing circuit and pump you full of foul tasting gas, but it worked just as quick as the IV stuff would and I dont remember a thing about it.

So I think it was the anti biotics that made me moody yesterday and have since been taken off them and placed on oral ones instead. Which is lucky as my cannula was about to tissue, I could feel it becoming painful. And my latest blood count says my white cells are upto 4 now which is much healthier.

I was even allowed out this evening so I went to surprise me sister and see her new house and we had tea at the nice pub by hers. Now im shattered, but looking forward to getting out again for a few hours tomorrow.

I have just had 3 hours of uninterrupted day sleep in my own bed in my own room *sigh* ah bliss.
Unfortunately, no I am not home just yet but have been granted a few hours off the ward each day to start adjusting to being out and about again and to see if I find any problems. But anyone who knows me knows how much I love day sleep.

Yeah, so my weekend, not what I planned but yeh.
Started off on friday my doctor told me I could go out for a few hours each day between my meds. He cant send me home yet as I dont have the equipment, but thought it would be a good way of breaking my time up and such. So Saturday morning, right after 10am meds, I left the hospital for the first time in 15 days. Went home and saw my tortoise and had a good snuggle with them. Man I have missed them. Forgot how cute the baby one is when he sits in your hand and stretches his head out to rest on your thumb.

I decided that I didnt really want to stay indoors as I was fed up of being stuck inside, but as I was getting pretty heavily out of breath just walking around the house, I wouldnt be up to much walking. So we went to a supermarket where I was able to lend a wheelchair. By the time we clipped the trolley on the front it felt like an armoured tank, but at least I was out. I kept a scarf around my neck covering my trach and so got some funny looks as I hardly look in need of a wheelchair.

Navigating around the shop was pretty hard, but it was nice to be able to pick my own magazines, drinks, junk food. Right at the end of the shop, we walked in to Sid, my college tutor. He asked how I was and said I was looking well and such. Was a bit awkward. I have never ever walked into him outside college and my first few hours out the hospital and I do, how typical.

So went home and had tea and went back to the hospital, absolutely shattered. I basically curled up and slept for 3 hours, waking around 8. Had a shower and a sandwich and gossip online with some friends and went back to sleep again.

Sunday, got up and ready to leave the ward again at 10. Mum picked me up and we went home. We were waiting for my dad to get up from his night shift and then we were going to go surprise my sister by visiting her new house and have a bit of dinner on the way home.

I had only been in ours for about 30 mins when I got a killer headache and started aching all over. Soon I was throwing up and virtually crying in pain from my head and my joints. I couldnt stop shivering and had two jumpers and a blanket on. They bought me back to the hospital.

My obs where taken and my pulse was high as was my temp. I still couldnt stop throwing up even though I had eaten very little. Its really hard to trow up with a trachy as you get out of breath so easy. They called the doc to examine me and gave me some anti sickness. He couldnt find anything wrong as my chest and everything sounded clear. So he ran bloods (Thank god for my hickman line). He wanted to draw normal blood too but he knew what my veins were like as he had been asked to cannulate me a few times when he was on nights and my cannulers kept failing. He had a look and alittle poke but gave up. Said that if the bloods showed wrong results or anything he would come back for another go.

So I spent all of Sunday sleeping and throwing up. By tea time I was starting to feel better, though I still had a temp, but I was able to keep fluid down again so mum bought me some food in, which also stayed down.

Slept right through the night but morning obs showed that my temp still hadnt come down, even though I felt cold. Saw my normal doctor again, he was worried about my temp and said I would probably need anti biotics but they where still waiting on cultures.

I slept most of Monday morning, had my dinner and then mum came to collect me. Went home and decided to go for a nap in my own bed.. Didnt think I would sleep for a further 3 hours. Had my tea and came back to the ward again. So that was my weekend. So much sleeping is unbelievable. But tonight my temp is back to normal, my heart rate is back down to where it usually is for me and I feel a hell of a lot better. So hopefully im going to avoid the anti bioitcs and I have just slept whatever it was off.

Mum thinks that perhaps i over did it on Saturday. I dont know. But I felt rough on sunday.

Where also looking into getting me my own wheelchair. Not exactly what I had planned to ask for for christmas, but looks like im going to be needing it. Dreams of jumping on the coach to visit friends in scotland and london are getting further and further away. Plus being in a wheelchair sucks. Not to mention my parents are old, they really cant push me around all the time. My dad has bad arthritis and my mum needs a knee replacement so pushing me around is far from ideal. But I just dont see any other option at the moment. Walking more than 10 steps I get out of breath and its so tiring. It just feels like a huge step backwards. Getting a trachy was supposed to cure me of my breathlessness, but it hasnt and I dont know why or where to go to next. I cant help but think perhaps there is something else wrong with me to make me this way. I havnt had the courage to ask yet.