Thursday, 15 November 2012

Welcome to my life..

I was having a very intense conversation with someone about what I go through.

This person said to me that I was brave and strong. That if they were in my shoes they would just break down. I then said to her that I had no choice but to cope. To struggle through each and every day.. No one actually knows how much I have to go through. they just let me get on with it.

So here's what my day to day routine is like.. I get up, I go downstairs and instantly have to do dialysis. sometimes I wake up a bit first sometimes I'm in a rush because I've over slept due to not being able to sleep the night before. I wait around half an hour until dialysis is done. then get ready for work. I sometimes have to walk to work which means I have to leave an hour before my shift starts just so I can get there on time. It takes the average person at least half an hour to walk to my work maybe less. But if I'm having a bad day I get breathless just by walking down my stairs. So as you can imagine walking to work is a lot of effort for me sometimes. I often stop for a rest or I get so breathless I have to take my inhalers. anyways, I do my 4/5 hour shift because that's all I can do before I have to go home again and do dialysis. I get picked up from work pretty much all the time. I get home and do dialysis straight away. I either have to then rush out to my 2nd job or I can relax at home. Currently it's been rushing out to my 2nd job. 4 hours there and I'm back home to do my last exchange for the day. I then try my very hardest to sleep. Sometimes I'm too bloated from the dialysis that I can't sleep. Often I get a lot of pains in my kidneys. nausea, or just purely can't sleep because I'm over thinking about my health. I suffer from insomnia a lot of the time. It's pretty rare that I can get to sleep straight away anymore.. Then the next day I'm too tired to do anything. Yet I still sometimes manage to get up and do all of what I did the day before again. I will do the same thing tomorrow and the next day. it's a lot to fit into one day. But I still do it because if I don't work I'll only break down because I'm just thinking about everything else. It's the only distraction, the only thing keeping me sane. Yet I'm pushing myself way to much to do more than what I can handle. No one notices, and no one really seems to care. Everyone thinks that I hate talking about my illness. I don't at all! It's because I'm not used to talking about it! No one bothers to ask me how I actually am. How things are going. Or if there is something they can do. They just see me smiling and assume everything is okay. Well it's not! I may have a smile on my face and I may act like everything is okay. It actually isn't!

That isn't even half of it.. I take about 6 different medication a day. Plus I have to have an injection every 2 weeks, plus blood test every time I go to the hospital. If I get ill I always have to tell the dr and the hospital incase the same thing happens again. the slightest cold/cough that the average person can get over is like the average person getting swine flu for me. I don't have energy, I sleep all day. I don't eat, drink anything. 9 times out of 10 I have I go into hospital because I've just simply had the flu. every time I have a cough I have to be careful that its not fluid built up in my lungs. Every stupid tummy ache I get could be because of dialysis or something else. So no matter what, I have to go and see my doctor.

I struggle every single day to keep a smile on my face. Sure I've broke down a few times but that's only because I needed the help. I've needed a step back. I don't ever do it though. I never ask for the help and I'm still taking on more than I can cope with. Every single day I just want to give up and just let nature take its cause. In all honesty there is nothing stopping me from doing that except for the fact that death scares me! It scares me so much that I'm willing to go through all this day to day torture just so I don't die. not many people actually realise that I would of been dead 2 years ago if it wasn't for dialysis. Screw that! I would of died 12 years ago if it wasn't for my mum taking me to a different doctors surgery. Just a few more weeks and I would of died. that's how close it came and not many people know that.. I sometimes think that it woulda been easier to just let it happen. Sometimes I wanna give up still soo badly. but even though I hate what I have to go through. I've learnt so fucking much!
Not to moan about stupid little things, treasure every memory, who my true friends are. People that have stuck by me. How much a job means, social life. Even though we may not get along half the time and even though I hate the way she does things. My mum has been the one person to stick by me from the very beginning. Staying at the hospital with me, always getting me to the hospital for check ups in London. I guess things changed a lot when I started dialysis. But the first 6 years of being ill my mum was just always there. I miss that. I miss how close we used to be, I miss her being there for me, I do.

I still have a lot more to come. I have very high blood pressure, which means I'm more prone to have a stroke or a heart attack. I'm at risk of suffering from diabetes. Later on in life when I need my 2nd transplant, I may not be able to go to the toilet anymore which means having a catheter inserted. I have a lot that I have to be prepared for. Yet here I am still fighting through and saying 'bring it on'

A lot of people have said 'it could be worse' yeah sure it could be. But it doesn't mean I'm not allowed to suffer. Sure I feel selfish for even saying I'm struggling. You know what though? I actually don't care. I am struggling, what I have to go through and what I still got to go through with is beyond anything anyone could cope with. People moan everyday that they hate their jobs, that they don't want to go to work. People take life for granted and don't need a job because mummy and daddy pay for everything. Some people have been lucky and been able to go to uni. study something they're interested in. Go on holiday. Have kids. Get engaged or have their own place.. So next time you moan about all that, remember, someone out there is actually struggling to get by each and every day because health/life is actually not that great for them. Not everyone is dealt a good life. just think of that next time you waste a day just slumbered on the sofa.

Life is tough sure, but there is always a way out, you just have to find the exit.

1 comment:

  1. Life is crap at times I agree! but what matters is how we cope with what it deals us however hard. I agree it is nothing to do with bravery,but keep at it, things can change for the better just when you don't expect they will.I was glad to see you spell out your life to others not many people think about the things you have had to put up with.
    Mothers are great! having just lost my mother in the summer I was so glad that she was able to see me get better and get my life back together after such a long illness.I feel sure you want to do the same for your mum:)
    I love your post about what you want to do before you are Thirty. Thanks to my mum I will soon be able to achieve on of my pre transplant wishes, like you I wanted to ride a motorbike (I used to years ago)This year I hope I will as I intend to buy one.
    Hold on to your dreams and do all you can to achieve them.I really hope that you get your transplant soon and are able to everything you hope for:)