Monday, July 12, 2010


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.

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