I be back

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

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

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

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

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

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

Tea?

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

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

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

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

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

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

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


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

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

Horsing around in Camden

Hospital common sense?

Yes, I was having an early night tonight, but found I had loads of catching up to do so oops. Still not fully caught up, but perhaps enough for tonight after this entrance.

Though, were to start.
I guess, I am starting to cope a little better with my bitter periods. Things get annoying and I feel like sometimes, I am in this no mans land. (More about that shortly) I often want to sugar coat things, not post when I feel crap and just post the uplifting insights. But that was never the intent of this blog, and I find that trying to hide my bitter periods, does tend to make them worse. Though, I think perhaps, things mentally, are starting to break down slightly. For now I will keep an eye on it, but all these little niggling things, such as pseudo hallucinations and server mood swings are warning signs. But for now, they can take a back seat, along with my paranoia.

So, on to the joys of hospital common sense. It is true what they say, common sense really isnt that common anymore, and especially not in a hospital setting. They had me down as one of the last on the theatre list on Monday, but after me, being determined to be classed as fit for travel by early evening, they played around with the list and put me first instead. I must say, it is nice how they are so accommodating for things like this and I do truly appreciate it.

So, by afternoon, the painkillers from theatre are wearing off and I want to stay on top of the pain before it all builds up. From experience, I knew that I needed something stronger than paracetamol at this time, so I asked the nurse if I could get some. After looking at my drug card, she says, well your written up for OraMorph, I will just get it. Now, I was hoping to be leaving the hospital within the next couple of hours, to commute the 250 miles home, via bus, train and car as well as stopping for food and keeping fluids up. Oramorph would have just knocked me out and made getting home so much harder. So, I asked if I could have something in between the two. Again, looked at my drug card and said, oh well, once your meds to take home come in, you are prescribed co drydamol and co codamol, so I guess once your discharged you can take them, but I cant give them to you as there only to take home. Gah! As a result, I took the paracetamol and as predicted, within 40 mins, I was getting to the point of pain that stopped me from drinking and made everything worse.

So the next common sense thing, I always ask for normal tablets to take home as I hate soluble and given the volume of tablets I have to take anyway, soluble dont make any difference, apart from being awkward to manage when out and about (i.e, traveling home) So when I got my meds to take out, they gave me soluble painkillers, which ok, granted, they are for throat pain, but then, is a big box of anti biotic, which are bloody huge ha. I guess it just makes me laugh.

Antibiotic

Tonights cocktail of 18 pills

I should write about Mondays surgery, but right now, meds are kicking in so I think now is a good time to sleep.
Though, if anyone has any tips to stop the bottom of your nose getting sore when there is something rubbing on it, they would be greatly recieved. I am wearing my humdifer at night, and its a little like nasal specs, but  bigger and harder, to allow a thicker airflow through (Its set on 45L/Min at present)

Huge nose forks (eew)

Time

My weekend has generally been ok. Still waking people up with my cough of a night time, but my breathing dosnt seem to bad. Well I say it isnt, people still keep commenting on it, about how I sound like I am panting and I guess sometimes I am, but its not something I notice until its pointed out, so perhaps its not a major concern. I actully found my peak flow meter yesterday, after having lost it in the tip that is my room a few weeks back, and at the moment, they are pretty high. I think the worst part, is that my neck and shoulder muscles seem to ache all the time, but I am going to have to start taking some routine painkillers anyway.

I have found, that my throat, actually feels raw and sore most of the time now. I can block it out, but when it comes to coughing, I find myself screwing my eyes up to ignore the throbbing pain. This in turn leads to me trying to avoid coughing. With my history of pneumonia, its really not a good thing to happen. So starting in the morning, I am going to attempt to take regular pain meds and see if it helps.

Today was quite fun. Real christmas trees never seem to live long in our house. Having the heating on and people in and out all the time becomes a major problem, so we tend to have an artificial tree now. We got one, when I was a lot younger, I must have been maybe about 10 and Dad and I hated it. It came out most years, with the occasional year were Dad and I would have a quiet word, leading to getting up early whilst Mum went to work and buying a real tree and getting it up right before she came home.

But last year, with the whole hospital goings on, we kept with the fake tree. By the end of the year it had pretty much fallen apart and we decided to throw it out. So this year, we need a tree. Not knowing what is going on, makes it too much to have a real one, so we went out this weekend to have a look at some Garden centers to see if they have any.

We came home with a beautiful tree, I must say. Its 8 ft and has pine cones and red berries on it. I cant wait to see it decorated. Hopefully, my photography skills have improved in the last couple of years and I can get some real nice photos this year. This is one for a couple of years back.

My buy of the day, was a large clip on flower (Peony) in Gold. I am going to have so much fun with it this year. I have already just been playing on my web cam.

My original was that, if I had a plain top or dress over christmas, I could perhaps glitz it up by clipping this on, or even, to wear it in my hair. I think it is a little to big for that, but I could adjust it. But I also think that it would be a lovely prop to use in photography. I want some nice family pictures this year and the biggest problem I have is that when I photograph my niece, she always looks like she is posing. Natural photos are much nicer!! And perhaps, if I get her to play with this, it might work. Now if only I could find a teenage boy style prop too!!

Of course all this talk of christmas is making me realize how much I have to do if I want to succeed in getting a personalized gift to all my close people this year. I havnt even thought of anything for my Mum yet. I was thinking perhaps I could make her a stocking, but I havnt really got the time to stitch anything fancy as I am a super slow sewer. I have an idea of how I could do it, but after scouring the web, I cant find anyone having written about doing something similar, so perhaps it wont work. I was going to kinda, cut a design out like a jigsaw in card, cover with appropriate material and lightly stuff, then use my hot glue gun to stick the fabric on the back. If it works, it would make a kind of 3D material picture, that I can then use as the front of a stocking. I need to experiment.

But then my logic brain kicks in and says, well you need to finish some of the other projects on the go first, like Adams picture and Shells album, but there are things that need doing sooner, such as mums birthday Flower basket and Alisons birthday present. But then, if I dont try the glue gun thing, I wont know if it will work or not and that present will be left in the balance.

This week I am going to aim to get some of my projects finished, but I may also try to find some card and do a quick practice run of the glueing thing. eeps :)

physical update

hmm
I have spent all evening wondering if I should write this and how to attack it if I do write it.
But I began this blog, in hopes that if someone was going through something similar they would know they are not alone. Mainly I wanted to share my experience with all aspects of it, so I am going to detail it.
However, I want to make it clear to myself and everyone, that this, this isnt a rant or a moan or anything like that. Its just how it is right now.

In my usual hospital, I have gained a bit of a reputation. All of the staff there know me and they all know that if I start to get ill, something needs to be done pretty quick. I am known for going down fast.
Every time I have gotten sick, I have gone from well to needing hospital in 2 days if not 2 hours.
This time is different. Yes I have been feeling tired, but nothing that has overly worried me.

Over the last few days, I think I have started getting more breathless.
Its not much, its not something that would be noticed on a day to day basis.
But when I got back from London, 2 weeks ago give or take, I could walk fairly fast up the stairs. Yes I would be panting when I got to the top, but I would be able to carry on with what I was doing or picking up whatever I had gone up for.
Tonight, I have just walked, fairly slowly up the stairs as I was behind mum, but when I got up stairs, I had to stop and sit down for a few minutes till my breathing settled.

I noticed this a few days ago, but I put it down to being a bad day.
I still am hoping it is/was a bad day.
But in my mind, I'm spotting other things.
The problem is, are these new things real? is my breathing getting worse?
Or am I panicking? Is it stress? Is it psychosomatic?
These are answers that I dont know.

Usually, when walking, if I start to feel excessively breathless, it usually means my inner tube as clogged. I am able to take it out and change it and clean the old one. This has pretty much become an automatic movement, kinda like getting a tissue out to blow your nose. Today, a couple of times, I found myself in the midst of changing the tube, however, when looking at the tube I was taking out, it was pretty much clear, not how I would expect it to look if it were clogged.

When I got home, I thought I would pass a suction tube just to make sure there was nothing blocking the end of the tube just incase. If I am honest, I have been avoiding using my suction. I dont like it, but I dont want to get used to having it, I would rather work on strengthening my cough.

The tube passed with only a small amount of resistance, which is odd as there isnt normal any resistance. But it felt kinda different. It felt tighter, more restricted. However, im not guaranteeing this as a symptom as it has been a while since I passed a tube, so it might just be me working myself into a worry.

I'm not overly concerned yet. As I said it could be all kinds of things. My chest could be too dry, it could be the beginning of a chest infection, it could by psychosomatic, it could be that I am over tired, it could be a whole host of things.

The thought is still in the back of my mind though.
Mum said, that while in London, the surgeon said that my lower airway was also narrowing, as in below my trach tube. I didnt know this was possible and I'm still not sure.
I didnt hear him say it, but then that could be a result of crappy hearing and/or post anesthetic brain.

I have not mentioned this to anybody yet. This isnt something I am overly worried about, sure its on my mind, but there is a lot more ahead of it in my mind.

I trust my team and I know that, should it be something like lower arway narrowing, that they will look after me and sort it. In like 9 days time I have an appointment with my surgeon up here where x rays will be run, the week after that I have an ENT appointment with my other surgeon, then I have London. And worst case, it is bad when I get to london, I will be going to theatre that day anyway so they can get a proper look and sort it. In between that, I can (well mum can) phone my ward or the GP will fit me. And of course there is the option regular people have of A&E., though I am told , where possible to avoid A&E. A&E tend to like to want to fiddle and save the day. They like to do procedures in ressus in the name of stabilizing you or assessing you. Heres where memories of being put on CPAP come flooding back so that the doctors can lie me flat enough to attempt for the 12th time to insert an arterial line. Plus A&E, is riddled with infections, which would be bad right now.

So the plan is, to continue to ignore this. I am pretty sure it is going to amount to nothing and I have back up plans. And I am feeling ok in my head space. I can deal with this. This isnt scary, this isnt forever and things ARE going to improve.

Fraud?

I kind of know what I want to say, yet I have no idea how to word it. How to approach it, how to express it, just how to get it out.


Do you think it is possible for someone to understand how long term sickness feels, if they have not experienced it themselves?


I am starting to think perhaps its not. I think a lot of people can say that they understand, but do they ever truly?


Its something that seems to keep happening lately, but then, maybe I am fault. I dont know. Please be honest with me.


Since I first got ill 7 years ago, I have always wanted to be as 'normal' as possible. As soon as I was able to I went back to college, when the deafness was diagnosed I didnt tell anyone, instead I got my hair cut short so that I could wear it down all the time to hide my ears. I avoided physical contact with people so as they did not see my tremors. As my breathing got worse, I tried all the treatments I could, as long as they didnt interrupt my college time. I remember at one point being admitted to hospital for an infection. They tried many times to get a line in and the only place they could was on the back of the knuckle, which tissued after about 8 hours. Ward rounds began at 8am on Monday morning and I begged to be seen first and then to be discharged. I went straight to college that morning in time for my 9am lecture, only stopping home for 5 minutes to dig out a pair of fingerless gloves so that nobody saw my black and blue knuckles. The point is, I always tried my best to keep up with what was considered 'normal.'


I think a lot of people when ill, will often complain a fair bit, which is to be expected. But I think when it is a prolonged illness, you kind of give up moaning. You realize that things could be a lot worse and you find complaining dosnt actually get you anywhere. Of course there is always that constant worry over your head that if you complain whenever you feel ill, people will soon get fed up of you and you become known as the miserable one. You save complaining for the days when things get really really bad, that dosnt mean that the days that you dont complain are easy, it just means your getting on with things.


I think perhaps, people around you become acustomed to this. They begin to think of they are fine, they are not complaining so things must be easy for them. But this often isnt the case.


Sometimes, something completely life altering can happen to you and again you keep complaints to a minimum. People around you still think that you can do everything exactly the same as before the change happened. But again it dosnt work that way.


Sometimes, you cant just cover everything up and pretend things havnt changed. Mentally it might be to hard and physically its likely to be impossible.


Then come comments such as you should be working, why do you get benefits and you will get caught out. Im not a fraud. I really would love to work, probably more than anything else.


The day I turned 12 I got a paper round, I was doing 4+ a day at one point and even more when people were off. A month after I turned 16, I had a part time 24 hours a week job while in school, as soon as study leave kicked in I went to full time and worked tons of over time.


I like working, I like meeting new people. If I could work right now, I would. But lack of voice, lack of hearing, permentant infections and constant hospital appointments and admissions make it pretty impossible. And I feel guilty enough for that. I hate living on benefits, on just enough to keep my car running so that I can actually get out occasionally and so that I can get to appointments.


I hate the looks you get when you park in a disabled bay so that you can get into the shop easier and so that you can get into the car quick should their be a problem. Old people are the worst for scowling at you. Or, the look you get off people when you use a radar key to get into a disabled toilet, even there faces with that look of disgust on when you use a disabled one in stead of a normal one. But sometimes, I need the privacy of a private toilet, whether it be to have a coughing fit or because my stomach is off thanks to the meds. It might even be that I need to wash my tubes and I highly doubt people would want to see me washing sputum off in a sink in a normal toilet. It sickens me enough without others having to witness it. Or perhaps I just need to use the mirror in private to clean up a wound whilst I am out.


Sometimes I want to say to people, think back to a time when you where physically sick and went to a doctor. Remember how rough you were feeling to make you go to them, or to get medication. Now imagine feeling like that everyday for months on end. Now lets see you act normal and get a job and do loads of extra stuff.


I have done the physical illness and I have done the mental illness and I think they can effect you so differently. Mental illness is truly truly horrible, but I would prefer that to physical illness. I would prefer to be in the frame of mind where I dont want to do stuff, rather than being in the position where I want to do stuff but physically cant.


I have been suicidal and wanted to die but I have also been in the position where I have thought I was going to die. They are so far apart on the scale its unreal. With mental problems, as out of control as you feel, you are still in control, at any time you can get scared and say stop, you cant do that with physical stuff. With mental, sure you plan stuff for once you are gone, but in your mind set, it is the right thing to do, you dont feel sad about it, guilty maybe but not sad. With physical your always planning things, you never know when its going to happen and you fear it and often dont feel ready. You cant make that last call before you go, you cant do that one thing you wanted to, you cant say give me a minute to fully think on it. You dont have control over it at all.


hmm what is the point in this. To sum it up,
*Just because I am not complaining dosnt mean I am not suffering.
*Dont be judgmental. That normal looking person getting out of a car in a disabled bay may actually need it.
*Know that things are not always going to be the same, no matter how much anyone wants it.

London!

As most have you have probably already figured out, I am indeed back from London.

Stupid computer issues are still being annoying though, I tell you the company my computer comes from are the bane of my life. My computer is involved in my life so much, that to go without it for any period of time is hard, but its over a month now since I had a full working laptop urgh.

I rang to tell them it had a fault, it took them nearly a week to collect it, they then had it for over 2 weeks and another week to return it. I get it back today, unzip the case (It was sent off as laptop, charger and case, all with my name in large letters on it) To find only the computer no charger. What use is that!! By the way it was the cooling system that had gone. After 2 weeks of not hearing from the company I got my mum to ring them and their reply, yeah its back sitting here, well gee thanks, weren't you supposed to email/call? When asked why it had taken so long, they said because its an insurance job, payments had to be sorted. Ermm no, it was a warrenty job, nout about insurance. When I get the letter back today, it was sent to sony in Germany for repair as it was a manufacture fault. So the company didnt even do anything with it except ship it and return it and they still mess it up.

I paid extra when I got it to upgrade to a sony as they have a good rep, never again. Thats the cooling system and motherboard both gone in like 8 months on a top spec laptop. They send their appolgies and a free cleaning cloth (Like you get with cheap sunglasses) Anyone in the north west, if you get DSA, avoid Remtek at all possible costs!

So yeah, back to London. It was fun. It made me think a lot, but fun all the same.

Got into Euston station about 1, so I took mum out for a taste lunch in Prezzo, which does the most tasty Italian food. nom nom



We then took the short stroll from Euston to Kings Cross and booked into my mums hotel room, dumping half my stuff and all of her stuff there then straight back out to book me into my hotel (or hospital hehe.) My letter said I had to be there for 4, we got there about 4:30. The letter said ward B, which had a big sign on the door saying shut go to ward C. Went to ward C and they directed me straight into a room that resembled a fish tank. Full windows the length of the room. Full monitoring until next to the bed and a load of equipment such as resus trolley, and about 4 oxygen ports. (I was later to find it was a HDU room I was in)

Pretty uneventful to be honest. They said I would be on the early morning theatre list, but didnt end up going down till about 3. Under for about an hour. Pain was manageable, but when i came around it felt like someone was sitting on my chest. I tried telling them, but the drugs where still in my system and I couldnt lift my arm to my neck to talk so I began to panic. They ran a few nebs and gave me more pain relief and it seemed to ease off.

Was discharged the next morning with a little bit of information. (See previous post)

Was pretty tired so didnt do very much, before putting my mum back on the train. I went to stay with a friend. we had a pretty laid back week, lots of munchies and films, which was ideal.



And of course drank lots of food coloring.


Went to Camden one day and drank lovely milkshakes in an American Dinner. I also managed to finally find a nice bag for the summer to carry all my junk around (I usually have a black Jack Skellington one, but black really dosnt look good in summer)I needed to to go across my body to distribute the weight, but big enough for things like alco gel, spare tubes, drink and most times my camera. (I dont leave the house without spare tubes and tissues and a drink)


We also had a day at the zoo. We saw Otters.


A gorgeous Galapagos tortoise.




I found Nemo!!


And dory! (Yes I love disney)


I found a pushmepullyou (Anyone who dosnt know what one of them is you need to watch http://www.youtube.com/watch?v=niKkURpdzIQ&feature=related (wont let me embed) but the 1967 version of Dr dolittle is the best one!! )



There were lots of bright colored birds

Including ones that used the same hair color as me :)


Lots of bright butterflies that would come and land on you.


Giraffes!


Tiny baby monkeys! (On the left on top of the log)


Pumba!! (there goes the Disney thing again hehe)


And the most gorgeous penguin! They were all being fed and he was following the keeper around. He wasnt interested in the food, he just wanted a cuddle hehe.


Ah it was great fun.
It was a really big step I think. When I first got told I had to have the trach, the thing that put me off the most (apart from the obvious) was not being able to jump on a train/bus to go visit or stay with friends. I had been used to going to visit people every couple of weeks and I didnt want to lose that. Well I was already down there so I stayed and took the train back on my own. Had to take a big case to carry my nebulizer in and all my other junk like medications and dressings. I didnt take my suction, I thought, if I need it, then im not well, so I can either jump a train home or go to a hospital there.

It was difficult sticking to my routines of nebulizers and dressing changes, but I did enough to survive on for the week.

It was also a bit of a wakeup about just how different I am from last time I was there. Since I had started visiting a friend there, I always had breathing trouble due to my stenosis, but the main factor was the depression, I didnt want to do anything, but when we did do stuff, I was able to keep up. This time it was the other way around, I wanted to be out touring and seeing and doing things, but just could not keep up with everything. I used to love getting the tube as it was so quick and directed you straight to where you wanted. This time however, I dreaded it. Most the stations have escalators, which is ok, but a lot of stations and attractions in london involve stairs (my worst enemy). People would be virtually running up them and I was going as fast as I could, but still gasping. I do hate that feeling. I could never live in London, they all walk to fast.

But its a step in the right direction towards independence. And who knows, if they fix my airway maybe one day I will be able to run up the stairs with the londoners.

Die quietly

She sits on her bed, catching her breath.
Just run a neb and suction, with not much relief.
That marks round four of this evening.
Hears mum footsteps as she comes in to her room.
They make eye contact.

Her mum comes and hugs her, saying everything is going to be alright.
That the worst is over.
Explaining that she cares.
Asking if there is anything she can do to help.

She blinks, to clear the tears from her eyes as she rests back on her pillow.
Her back aching from so much coughing.
As her eyes clear she tunes back in to what her mum is really saying.

No there is no hugging.
Hugging is a thing that only happens to keep up appearance with hospital staff.
None of them here.

She tries to focus on what is being said.
But it feels almost as unbelivable as the last image.
She is being lectured.
How there is so much to do, how she should be packing.

As tears begin to form in the corner of her eye
she blinks them back
Her mum storms out
Time to move again.

Yeah as you can guess, I spoke to soon yesterday about feeling better. I have been semi awake since 4am (21 hours ago) I awoke coughing, chocking spluttering and gasping. Old memories come pouring in, I cant go back to this, not now, not ever, but escpially not now.

4AM

Felt so rough I actully saw the doctor this evening. She said give the anti biotics a bit longer to kick in. Tole her I was having to run a neb every 30 mins to keep actully keep breathing, she said that is fine and to continue with it if it helps. Well yeah that is helpful, its totally fine, I dont need sleep at all. She said hope you have travel insurance as if things dont improve you will need to be admitted. (Surly it would have been more proactive to admit me now, give me IV drugs and humidity and kick this infections butt before I slide too far?)

8pm

If things get bad tonight im to go to A&E. Problem is, My A&E is not my specialist hospital that I was in last time. It is the hospital I have been in a few times since my transplant. It is the hospital where you are pretty much gaurnteed a 2 week stay as it takes that long to actully get a doctor to review you once they ship you to a ward. Its the hospital, where you usually come out with more infections than you went in with. It is not a clean hospital. And yeah, there are certain steps you can take yourself. But when you are given a side room for being immunosuprressed, but then find out that your room, adjoins and shares a bathroom with the side room next door, you begin to worry. When you look outside and see that the side room is being barrier nursed and has infectious signs all over the door, you begin to panic.

A bottle of spray bleach becomes your best friend. But of course when your feeling crap, that isnt always an option. When you enter the bathroom and smell cigarette smoke, you just want out as quick as possible. Coat yourself in alco gel.

Please dont let me get rushed in there before my holidays. My parents need this holiday, I need this holiday. 2 holidays have already been cancled due to me being in hospital, dont make this one the same. Come on chest, start working properly.

Now

Some days

I wish that things were more predictable.
Some days, I am pretty normal, you would know from looking at me that there is anything wrong. I can push myself and I can have good days, I can really push and have a couple of good days. I can to a point put a front on and grit my teeth and get on with things, without anyone knowing that I am feeling rough.

But then other days, days like today. I just feel so weary and tired that I have not the ability to care about keeping up appearances.

I slept well last night and got plenty of sleep. I did go out yesterday, but it was for a short time and I didnt push myself I just took things slowly and such.

And then I awoke this morning, and all I wanted to do was curl up and sleep for another few hours. I forced myself to get up and dressed. My usual routine now would be to help mum with dinner then we usually do something, like go for bread and milk and such. But I just didnt have the energy. I sat in the chair, staring into space. I managed to go out and get a drink just as dinner was done. I sat watching tv after dinner with my mum, shivering and feeling further exhausted.

I went up stairs to get a jumper, sat on my bed with my jumper on catching my breath and just couldnt move. If I was staying in I would normally play on the computer or read or something, but instead, I ended up curled up kinda drifting between sleep and awake for about 3 hours.

I had a routine doctors appointment to go to, to get my holiday meds sorted. Managed this, but had to ask mum to drive me as I just didnt feel up to driving.. Went home and curled up on the sofa. Didnt help with tea, didnt wash the tea dishes. Dragged myself upto bed, put the tv (which I hardly ever do) and just lay watching it all evening, I dont even know what I watched.

I cant even sleep in tomorrow, I have to be up mega early (for me anyways) as I have Liver clinic in Leeds. First one since I got trach. So thats about a 80 minute drive each way, plus time in the middle for bloods and examinations and speak to the doctors. blah. My dad has altered his shifts to take me so that he can drive. I just hope I dont feel as exhausted tomorrow.

oh and as for the doctors, my swab came back. I have cleared the staphylococcus but the pseudomonas is still present. I dont have a temperature, so it does seem to be just in my trach site at the moment, however, I have to do a sputum test first thing in the morning (joy of joys.) and have that sent off to be tested. Then I have a nice course of cipro to complete. Which I hope work as I finish them the day I go on holiday so if it dosnt clear it up, it will have to stay there for 2 weeks.

On that note, I can barley keep my eyes open. The only reason Im sitting here writting is because I forced myself to run my nebs, though it was a battle. So im going to crawl into bed now. And be up in 6.5 hours.

truth

Sod it, I said i would be honest. And if anyone is does think bad of me, so be it. I feel guilty enough already so yeah.

So, for the last week, I have really let myself go.
I had all my pills sitting there ready to be taken and I just looked at them and burst into tears. Is this what my life has become. A mass of pills. Chemicals to make my body work normally. And I looked and thought, by taking these, I am accepting everything that is wrong and I dont want to accept it, not to deal with it. I felt good and positive, but physically could not bring myself to take the pills. Every-time I put them in my hand, my eyes watered up, my throat closed and I just couldnt bring myself to take them. So I didnt.

Which is bad enough if it had been one night. But it wasnt. I couldnt force myself to take any of my regular meds, nor do any of my treatments, nebulisers, suction or even take the anti biotics I was prescribed. I stopped wearing my night time filter and I stopped putting cream on my infection.

I went through a lot of withdrawals on my meds and saw a lot of symptoms come back. Heart running on a resting 130 bpm, chest clogging up, temperature rising, skin breaking out and stomach playing up. And yet I still couldnt bring myself to take them. So for the last week I didnt bother at all. Which is really bad.

I still feel the same way and I am still struggling to take them. But if I get ill, its not me who is going to suffer most. Its my familiy who have already been to hell and back with my medical crap. We go on holiday in May and I dont want to effect that by becoming sick.

But more than that, I might not want to accept these problems, but ignoring them is not going to make them go away is it. I want rid of this damn trach more than anything. But if i cant be trusted with medication and looking after myself at the moment, is any surgeon going to be willing to take the risk with me to try a new experimental procedure?

So for more than just me, I need to start taking my meds again. Ive just sorted them all into boxes.

and im going to try and restart taking them. Ive just done my nebuliser and suction. So heres hoping they will go down and stay down now.

Frustrated Part 2

Have I mentioned recently how much I hate that stupid trachy nurse at the royal? oh I have, darn it, Im going to re-mention it anyway as I saw her today and she has aggravated me all over again.

So I saw her again today (wow is it really a month since then) as well as my district nurse (dn) as my DN wanted to do her first tube change under supervision. Since I last saw her, 2 different ENT consultants have looked down my throat and both have exclaimed at how red and inflamed it is and they are going to investigate. We mentioned this to her and she just shrugged it off, said most patients with trachs have that stop worrying. Im pretty sure if it was a normal level, the consultants would have maybe, i dont know, been aware of it? Mentioned it? Not wanted to run further tests on it? But of course she knows best.

Asked her about getting portable equipment to take on holiday with me such as a nebulizer and suction. She said, oh I wouldnt know, Trach patients dont need all that. Oh really? I must go and tell those consultants that have stressed to me how important it is to use both, that they are wrong, I dont need them. If I dont use them, I spend most the night coughing and chocking and I spend the day gasping for breath, till infection hits in and knocks me out.

I also mentioned about the tube sitting at an awkward angle. After repeating myself 3 times, she said it was nothing to worry about, I just glanced at my mum in a kinda 'surprise surprise' look. So she had a look and said yes it is sitting wrong. I asked her why this was, she didnt know, but I shouldnt worry about it. I suggested maybe it was being pushed into a weird angle by my stenosis coming back. She agreed that it probably was, but not to worry about it. Its easy for her to say that, dont suppose she has ever experienced her airway cutting her oxygen off from her lungs has she? I mean maybe I am over reacting on this, but I think given the amount of times I have been rushed to theatre, the amount of times I have had to be resuscitated on the ward and the amount of time spent in ICU due to my stenosis cutting off my oxygen, that worrying is a fairly rational thing, that would perhaps respond better to some reassurance rather than a shrug? I mean, what if the stenosis carried on past the end of the tube? What if it pushes the tube so much that it makes future changes harder?I know I shouldnt freak out over this but sometimes I cant help it.

There where a couple of things we asked her, and she either didnt know or pretty much said I was silly for needing it. She mentioned about me eventually learning to do my own tube changes. I just looked at her (I was completely peeved off by this point) so I just said, with a bit of luck, I wont have it that long. Mum laughed, I shrugged and just said, I hate the trach, I hate the appointments that go with it, if I can get rid of it anyway at all, then I will. She kinda looked the other way then and we walked out.

Least fingers crossed I shouldnt have to see her again now that the DN can do the tube change.
I probably sound like an arrogant spoilt brat when I talk like this. Im not, really im not. Ive done all the hospital admissions, Ive done all the surgery, the research, the conferences. Doctors talk to me properly, they explain things throughly and they take into consideration that I want to know what is going on, that I know what they are talking about, I know the jargon and the reasons behind things.

Since my transplant, I have been taught to question everything. What they do, why, what medications they give me and why, the risks and benefits of everything and if there are any better ways to get what I need. I was taught that from ICU. They said, a lot of hospital staff are dumb. Learn the stuff that you have to avoid, learn your allergies, learn what you need to stay healthy. And question everything that is given to you to make sure it is safe.

And that has come into play so many times. I have been prescribe anti biotics that have already destroyed my hearing and ones that effect my immunosuppressant levels and ones that can knock my liver off. But worse than that, I have literally stopped staff from putting a medication in me when they have been stood next to my bed with the needle about to put it in. I am severely allergic to Heprin and Clexane. Under no circumstances am I to have this medication. If I do, it appears to work normal for the first few hours, but then my platelets suddenly drop and I bleed out of every orifice (Which is rather scary, I actully said goodbye to my mum when this happened) So they have to pump you with blood to replace what you are losing, but then my system goes nuts on the platelets and creates tons and tons of blood clots everywhere. Basically if given Heparin, within 3 days, I will be gone. Last time they gave me a tiny (like 2ml or something) of Clexane (which is much much weaker than heparin) and I bled out for 2 days and resulted in having a blood clot in my jugular vein. Hence why if I ever have to have a central line, it goes in the right of my neck not the left as my jugular is destroyed.

And even though I wear 2 red allergy bands, its written on my notes and drug card, people still insist on giving me it. Its standard procedure to use it for flushing lines and such with. So questioning is good.

But the nurse speaks to me like im some senial 80 year old who dosnt even know what year it is.
Just urgh.

London Free Hospital

So I have been a little out of it of sorts since I got back from London. Think I was over tired and it kind of amazed me how long it took me to recover. I mean I am what, 24 and 1 day trip, where I was only really walking around from about 4pm till 9pm, so 5 hours and it took me 2 full days just to recover enough to wash my hair. When I think that it was only last July that I was down in London and going for about 5+ hours day for 3 and 4 consecutive days. I thought i was recovered yesterday, with being in a good mood, but today I can barley keep my eyes open. Went the shop with mum earlier and fell asleep in the car just driving to the shop.

Anyway, onto other things.
So whilst I was recovering I didnt want to sleep permanently (though I pretty much did) so I began making the video that I said I had the urge to make. I have done the bulk of it, just needs about another hour spent polishing it up, playing with sound levels and fixing a couple of transitions.




Tell me what you think so far please. I know it will never do Eva justice, but as I said in an earlier post, this is more for me, to remember her by so Im not even sure if it is going to go anymore public than this blog. Plus there is the whole copyright thing to think of.

My next challenge if I decide to go public with it, is to get around the filters on youtube as it keeps muting the audio. It wouldnt be such a bad thing, but it mutes all the audio, not just the music, so I lose all the voiceovers too. I either need to find different music (but im kinda attached to the stuff I have, especially the last bit) or find a way around the detector.

So seeing as I am working backwards in time pretty much, im going to put down what happened at the hospital in London. I will eventually post a second post of what I did in London, but I am still in the middle of fixing the pics I took. (No tripod and it was wet and miserable so there are not many good ones)

So we get to the hospital, and it dosnt look like a hospital, it looks more like an old fashioned shop (again look out for pics.) I saw the consultant he is supposedly the best surgeon who deals with tracheas in the UK. He had not read through the letter so he glanced down it while we were sitting in the room. Then he asked to see all my medications. He laughed when I pulled out a big bag and was a little shocked at the amount of them.

Once that was done with, came the icky part that I knew would happen but was hoping it wouldnt. He decides to put a scope down while I'm sat there. So first off he sprays my nose with the icky tasting stuff that numbs it and up goes the camera. Now I have had this done a fair few times in the past and it always feels like I am chocking on it, however it was gentler this time as he couldnt go very far down due to my trach (bonus!) I was a little disappointed still though. In my usual hospital when they put the camera down, the images are displayed on a big screen behind me, so I usually ask to be turned around before they start meaning that I get to see the screen myself. (Yes I am a fan of gore) This one however was only a little one with an eye piece.

Anyway. he basically said that my upper air way is very red and very inflamed and it shouldn't be. He therefore thinks that something must be causing the inflammation. He agreed that I should have as much gunk on my chest as I do and that it shouldnt be as thick as it is. So he thinks that something is irritating my throat, creating the inflammation and the gunk. He asked if I had had a swallow assessment (which I hadnt) as it could be something like food or drink going down the wrong way causing it.

He has asked my surgeon here to organize a video fluoroscope, which is where you have to eat and drink different things while being observed and x-rayed. He also wants to get me in for another Bronscopy with an over night stay so he can get a better look. And if the professor person I emailed is free he wants him to sit in on it.

Ultimately, further action will depend upon the outcome of those 2 tests. He did talk a little about tracheal transplant as he knew that was what I had spoken to the other surgeon about. He said if nothing else works, then the transplant will definitely work to fix it (YAY!) However, it is not yet a licensed procedure in the UK. Which means that it could be years before the can legally perform the surgery on me, but im still hopeful. He also said that the success rate is much better if I lost some weight. So thats something I am going to have to work on.

He also looked at my neck, where it has been red and sore. He said it looked like Pseudomonas which is a bacteria that is fairly resistant to treatment. He said if it was this, then the chances of treating it would be extremely rare as it is hard to get rid of given its position. The next morning the nurse swabbed it and sent it off for cultures anyway just to be sure. I do have some bactroban there, but I am reluctant to use it. The bactro ban is a cream that can help clear things like MRSA up, however if you use it to much it wont work any more, so I am only going to use it when it gets to the point of being to sore to manage with normal painkillers.

And I think thats everything. so its all a waiting game at this point. It will probably be June when I next go down to London as the surgeon is away for April and I am away during May.

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.

Any chance of an extension

urgh why am I so damn tired all the bloody time!
Last night I got about 9 hours sleep with only 2 interruptions. Didnt get up till dinner time. Had my dinner and started drifting off in the chair. A bit later my friend came over and while she was talking to mum I once again fell asleep on the couch, where I remained drifting in and out for about 2 hours. trying to fix my mums computer and I literally couldnt stay sitting up so I left it broke for now. meh job for tomorrow.

But I mean come on, I'm 24, supposed to be in the prime of my life and yet I cant stay awake for more than a couple of hours.

oh well shopping with mother tomorrow. Hopefully more energy so I can walk around. Oh and I must have overdone it on the Wii the other day boxing as I could barley move my legs yesterday.

I wonder if the NHS would pay for an extension on our house? I have way to much stuff to store these days. I took these photos a couple of weeks ago.

This is my supply cupboard with dressings, filters, ties, cavalon, sterile equipment and other fun such things. On top is my home care file, suction catheters and my emergency/tube change box. I have since received another bag full of differnt dressings to add to what I already have so go knows where they are going to go.

My once beloved computer desk with my top spec machine on that I used to use for web design and programming. (That computer hasnt been turned on since October >.<)

This is Sam, by suction machine and of course the mandatory bottle of hand gel.

This is Nessie my Nebulizer (With a rather long cord so I could still do things like getting ready for college of a morning while it was running)

This is my Kit bag that I dont leave the house without. Alco gel, spare tubes, tissues, wipes, saline and filters. fun eh

My 2 weekly med supply (the other 2 weeks gets stored in cupboard whereas these go in the draw next to my bed)

And this (apart from dressings) is what I have to pack if I am going out for a night eg: 24 hours worth of
meds.

So yep, my once geeky room where the main thing was my computer system has now been taken over by med stuff. fun fun fun

hello brickwall

urgh
Ever feel like no one knows what they are actually doing?

When I saw my GP on Monday, I mentioned that I was still having trouble with the amount of crap and the consistency of it that I was coughing off my chest. The GP didnt know what to suggest but said she would phone the trachy nurse and get back to me.

Well the doctors rang (in the morning when they know and have down on file that I have no voice and I am home alone) to tell me that the doctor had spoken to the trachy nurse. The nurse thinks maybe my tube needs changing (even though I have had this problem continuously since getting the damn tube and its still been present after the last 3 tube changes i have had) or that it might be my central heating (even though I had the same trouble in the hospital where the heating was different.)

So the doctors where phoning me to tell me that I now need to run saline nebs 4 times a day. I explained that I have been running not only saline nebs but also hypertonic (6%) saline nebs 4 times a day each since I got out of hospital and for most the time I was in hospital. The surgery seemed surprised and asked me where I was getting the supplies to do this from?!?!? ermm on repeat prescription from you...... The GP even commented last time I saw her that it was excessive being tied to a nebuliser 8 times a day. *headdesk* She said she would speak to the doc and phone me back.

So when she phoned back the reply was 'Yeah the doctor still wants you to run these saline nebs 4 times a day please till your next clinic appointment and there is a script waiting here for you to pick it up' urmm gee thanks, Ill pick it up next time im there, I only just got my months supply off you 3 days ago so I have plenty here.

Its so frustrating! No one seems to have a clue and the trachy nurses answer to every problem is you need your tube changing!

Right now, I am searching through the drug tariff to get the codes for all the equipment I need to order and such. This shouldnt be my job! What would someone else who didnt know how to search and find this stuff do?!?! The nurses ordered me specialist dressings ermm about 3 weeks ago, still no sign. Trachy services around here really are crap and they dont have a clue how to deal with one.

And that is  my little rant for the night. Im really ticked off things around here. Almost makes me want to go out and fix it. hmm one day maybe.

Tonights cocktail. Pills the bain of my life. or should that be nebs the bain of my life after today.

Lonely

Im living upto my online name again. Im bitter and its becoming more and more prominent. 


Im lonely. Im fed up being alone in all senses of the word. Sure I have some great friends online, but that dosnt help the need when you just want to curl up with someone, or lean on some ones shoulder, to just sit with them and know they know what your thinking.


I mean im what 24 now. The last time I was in a relationship I was 16 and we all know how that ended. I know im damaged goods, but still 8 years, you would have thought I could have picked some desperate soul up.


Maybe Im not in the right place at the moment for a relationship, but you know it might have helped, just to curl up with some one, to cuddle, even if it was a friend. But no, I stopped talking to most of them. Couldnt stand the jealousy. Seeing them get engaged, buy houses, plan weddings, have kids, finish uni, get good jobs. And those I didnt push away purposely ran away screaming anyway. You only accept refusals to go out a certain amount of times before you stop asking. I just wasnt ready and now I cant cope with it. I see all my friends going to festivals, out with friends, generally having a laugh. And I sit in my room and watch from afar. Even if my physical stuff allowed me to go out, I wouldnt be up to it at the moment anyway.


It just hurts you know. Knowing that it is going to be like this for a while. I mean I know I desperately need to lose weight. Its just hard at the moment with all the meds and how hard it is to exercise and such. I know it could be far worse, but I am going to work on it.


But who wants to be with someone who wakes up several times a night feeling like they are drowning. Who has to put the light on and sit up for about 30 mins while they cough half their chest up. You know not exactly sexy is it. Plus the medical equipment in the bedroom, sure that must be a turn on. A suction machine all loaded up ready, a nebuliser, a draw unit full of medication and dressings and other fun medical stuff. And if I was ever to get to the point of actually sleeping with someone (breathing allowing of course) I would prolly need to ask them to wait a minute so I could get comfortable and dismantle myself. Take the hearing aids out, take off the glasses, clean my tubes so I can breathe. Oh and of course how can we forget the whole attractiveness of the body. The stomach that looks like a train map from too much surgery, the tube sticking out of my throat, the stretch marks on my arms and hips, the drain and line scars on my boobs and of course those lovely layers of parrell lines on my legs and arm. The lines that I love, the lines I crave to add to, my own version of surgery. My way of cutting out the bad, even if it dosnt last long. Oh how I miss that. 


You see self harm, was always my way company, my friend to turn to when things feel crap. It takes the pain away, its there in the dead of night when everyone else is sleeping, and it stays with you for a while afterwards, giving you that nice stinging feeling every time you move, just to remind you your not alone.


And psych declare me normal so I do just need to get over all this. Learn to move on. Move on with the fact that a true relationship isnt something that I am going to experience in this lifetime, no matter what.


The sooner I get used to the fact that Im not destined for a relationship, the sooner it will hurt less.