Treading Water

I feel like I have written in here in a long time. I mentioned last time that I was emerging from a dark place but things still have not been going as well as I might have hoped.

I feel like I am treading water in an endless ocean. Constantly kicking and fighting to stay afloat. Sometimes, I can manage it, I can keep my head above water, enough to look around, take some deep breaths and asses the situation properly. But then, other times, a wave will come and wash over me, or I will run out of strength and momentarily dip under the surface before bobbing back up to the top and gasping for air.

At one point, each time I came back to the top, I would feel relieved, I would feel joyous that there was still light and air in the world instead of the dark bleakness of under the water. But other times, like now, I go under and its hard to remember which way is up, or I think about that endless ocean and what use is it treading water constantly if there is no shore in sight?

Last time I posted, I was having trouble adjusting to some bad news. Today, I am struggling to adjust to the adjustments needed with that news, before being knocked under once again with the news about my next admission.

I know that I am being cryptic, I kind of have to be at the moment but tomorrow will bring further news and I guess that will either be a float or another wave.

To say that I am struggling at the moment would be about right. I crave so much that I dont know what I crave. I feel the need for a real good argument. A screaming and shouting match. Time to be angry at the world and perhaps bit out and cause injury. Actully, what I want right now, is to hide. To lock myself up somewhere and just cease to exist for a while at least.

Trying to deal with everything, without resorting to old methods, is a real task and a task that seems the world right now. But now is not my time to fall apart. Right now, I need to be strong and I need to put a brave face on. It dosnt matter the cost to me right now and it really dosnt matter how I do it.

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.

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.

all good things come to an end.

Ive barley been on the computer compared with my norm.

Ive had a friend over and its been a good but busy weekend. Need to recover now (lol) There will be more about this later.

Im just tired tonight. Its been one of those long days that you just wish would hurry up and be over with.

It was my sisters birthday so we were going to go out for a meal. We were discussing how to arrange things best and I suggested a couple of things, but nothing was decided. Then they decided that they were going to a certain resturant and I mentioned something about how many tokens they needed. With that I got my head bitten off. That all the plans need to be changed yet again as i wasnt doing what I said I would do. (Yeah, I would be doing it if you just told me what the hell it was supposed to be) Anyway, they got pissy and stormed out.

So I deduced that I was supposed to pick my niece and nephew up from school and wait at my sisters house with them. So I am sat in the car, in the car park, waiting for the youngest to finish and talking to the eldest. We had the windows open because it was hot and we were just talking. The guy in the next car kept shouting his head off at his kids and was beginning to really annoy me. Then he looks over and shouts oi, whats that you got in your neck?! (Yeah I did have my scarf on but it was lose as I was in my own car minding my own bussiness) I sort of shook my head and shrugged, thinking perhaps I had imagined it. So he shouts again. I just glanced over to him and mumbled something about it being a medical device and turned back. I felt so embarrassed about it. I know I shouldnt, and I also know that he as an adult should have had a bit more tact, but I just wanted the ground to open up and swallow me whole right there and then.

I made a cake for my sisters birthday, it was in the shape of hello kitty.

She seemed to like it.

I was talking to her later on, once my parents had gone home. Apprently mum told my eldest niece that I might have a nark on when I got there. (I have no idea why, when it was them getting pissy) and she told my sister that I had been out all weekend and had no meals at home at all. (I mean how dare I have any kind of social life for one weekend at the age of 24? Shocking isnt it) ha heres me thinking she would be pleased I was getting out, but of course, mother dosnt do pleased. Its so annoying. I know I need to keep doing things like this to get her used to it, but its been like this since I was young. I just give up on socializing and getting out because its just not worth the effort and the after effects that I get off my mum. It used to be the same with going to my sisters. I eventually stopped going as the time away wasnt worth the hassel and abuse I got when I got home. Its stupid, im an adult, I shouldnt be in fear of my parents.

Oh and even after asking mum not to say anything to my sister about me getting in touch with my other sister, mum starts talking casully about it in front of my sister, so I assume she told her then. (gee thanks)

So as a result of dad getting angry with me, the flashbacks have been on the edges of my vision all night. The blades sitting on my bedside table shouting out to me and a box of pills on my bed. It would be so easy to just destruct at this point. But its not worth it. I have the nurse out tomorrow so any damage would be picked up pretty quick. blah. But there is always tomorrow.

Oh and I am fully expecting at least one parent to kick off on me tomorrow, probably for not getting in till 10pm tonight (shock horror!) as they were in bed when I got home. But I dont care, it just gives me more fuel for my fire at this point.

Screw it

Slippery slope

So I havnt posted much recently, theres a surprise. My orginal aim was to keep this blog nice and positive. To a point. Well mainly to keep my darkest thoughts out of here. But perhaps that wasnt the best idea. There should be a more rounded view on things.

So things are not going great. I am still in hospital, though I dont need to be. The nurses whose care I will be discharged to dont want me to be let out till they are fully prepared and what with the holidays and now all the snow, that is proving to take a little bit longer than expected. so im still stuck in here. However, it does have its positives. While in here I am getting physio everyday as opposed to the once a week I will get once discharged. This really is making a huge difference, I can feel my stamina being built up and everyday I am working on increasing the speed on the treadmill.

However, mother is complaining about it. She said its like being instituonalised and that I should be home by now. Really it just means that there is lots of work going on at home and she dosnt see why I should be allowed to get to 'rest' in here as she puts it while she is doing all the work. (The work btw is things like putting the christmas decs away. If it was upto me none of them would have come out this year. Plus I am really not upto messing with dusty stuff and climbing in and out the loft, I have enough trouble with stairs without even attempting a ladder) More so her complaining is directed at me.

Its all the little things that get to me. The tutting under her breath, the implications of how lazy i am,  the whole, wel i have to visit you as the nurses take notice. Theres just so many little digs that she has at me.

Well at the moment my mood is everywhere. Im fine one minute and suicidal the next. so when she does get one of her digs in, or something happens that brings me back to reality on this whole situation, my mood just drops.

Fair enough, I should be able to cope with such things. But when my mood drops i become impulsive and this really isnt a good mix. I keep thinking about al the new methods I have of harming myself and how little it would take now to do some serious damage. I have considered things like dry drowning. I have easy access to my lungs so why not fill them with water or other substances. Dirty water would probably be more effective and would carry a higher risk of server infection. Then there is other liquids i find around, what would pepsi do? or alcohol gel? shampoo? The problem is getting caught, explaining it and such. water I could say it was an accident in the shower same with shampoo. Ive ben playing around with saline (technically im allowed to do it with a small bit of it anyway upto about 2.5 mls) I put 20mls in the other day, it felt kind of good, tickled a bit but deffintly gave relief. Then I tried with my hypertonic saline as i have more of that, but that made me cough so bad that i bought up more blood than normal so it wasnt very comfortable and it didnt stay in.

Then my mind wanders to what solids i could put in. But again there is the whole thing of getting caught.

I havnt taken my meds since i went home on friday either. Tonights are sitting in front of me and i doubt very much if im going to take them. Its good seeing the effects work so quick. My heart rate and blood pressure are very slowly creeping up, and i can feel my chest starting to clogg up. Not sure if its related but i felt so dizzy earleir that I couldnt stand up and then I threw my tea back which was rather nasty. so although these effects seem to be happening quick, i want them to happen quicker.

I dont know, I dont think I want to die (not right this minute anyway) but I am tired of living and see no way around it. Maybe a nice server infection would do it. Perhaps pneumonia, enough to have me knocked out and put in icu vent'ed for a week or so. The break last time seemed to help and restored the whole positive attitude so maybe that would work now.

I ended up cutting earlier as well. Nothing like what I wanted, im so out of practice and of course I had a nurse knocking on the door so I got distracted. But it felt good. Not great but good. It would have felt so much better if it was my arms. Oh how I want to rip them apart, tear them to shreds. Seeing pictures of slit wrists just looks so appealing to me, its like im attracted to it. One can only dream.

So I guess this is me going downhill again. Time to stop rambling now I suppose. lets wait and see what tomorrow holds.

Sinking

Ive been meaning to write for  few days. I put it off last night as  I was in a foul mood. I have no idea why I was in such a mood, you know when you just get in a mood for no reason and cant seem to get out of it. It was odd, as I was on my own all day yesterday, I was in isolation (I will explain i a minute) so I couldnt just go wander around the ward or anything and the staff had to gown up to come in so most of them didnt bother. Then mum text and said do you mind if I dont come in till later. She wanted to go for a walk around Birchwood and do non essential shopping and stuff) so it was 7 before I spoke to anyone properly. I spent most the day sleeping, curled up in a ball.

But as soon as she did come I didnt want her there, I didnt want to speak to her or anyone. I just wanted to curl back up and go to sleep. So I was very short with her and I couldnt help it. She started going on about speaking to one of the nurses where she works who deals with trachys and how I should have this care and that treatment and this equipment. I felt like saying I know but what do you want me to do about it. Its just so frustrating. I know they should be doing more but maybe if I was to try and speed them up it would mean me admitting how much things have got to change.

She kept going on about how I should be using my humidifier more, cleaning my tubes more often, changing my straps more often, having a new filiter every day. I felt like saying to her, well you know what, we could complain about the lack of info we have been given, but since you have complained every time I have been admitted so far its taken with a pinch of salt now. I mean last time, you had my dad fuming, you couldnt visit because 'you were too upset' and all because a nurse had canceled an appointment that I could not make it to as I was admitted. I mean really was it worth making such a fuss over something so stupid? And now that I could do with pushing them I wont because i have had it being a moaner.

So you just visited again today and im still in the same mood. I told you what Mr page had said to which you replied im sure the other doctors secretary could have told him if he was sick, so I said im only telling you what was told to me. We sat in silence then for a few more minutes until you got up and said you were going home to do some washing and that was it.

I know im not being a very nice person right now, but truth be told im struggling. I think im sinking into a bad depression. Im sleeping most the day and not talking to anyone. Building myself into a little box where no one can enter. Putting up those walls and believe me this time they are strong walls, I dont think I can take them down even if i want to. And suddenly and probably predictably, my mind races back to suicide and self harm.

I want to harm, but I know it will be messy and I dont have any dark bottoms I can wear to cover up. Different ways of killing myself are running through my mind, all the new possibilities that exist with my trachy. If only the bin hadnt have just been emptied, I could have gotten a syringe out of it and used it now. I could have been gone by tea time. I have no real means to do it in here, its so damn frustrating. Im impulsive enough that I would do it right now, without thinking about it.

Maybe its being stuck in this room too long. I say that it is approaching 3 weeks but its closer to 4 if you forget that I got out for one day near the beginning.

They say home hopefully on Monday, but I cant see it happening.

Man Im sinking low.
I hadnt realized till now how suicidal I was feeling again. But I will continue to paint a happy face on things. The staff here know me as someone who dosnt moan about being here and all the treatments and such. And I will wait. I will wait for one of them to slip up. To leave something in my room that they shouldnt. And then maybe I can act upon my desire.  I know its selfish especially this close to christmas, but I have had enough pain, enough of trying to adjust, just enough. Im sure in time they will forgive me and see that it was truly for the best.