For life's little ups and downs.
I started this blog to tell my story, about who I am and what I do. On top of the health problems and raising awareness for those, I also use my blog as a way to help promote other causes, particularly ones which affect the most vulnerable. I live with a number of different and complex health problems but I refuse to let anything get me down. I know how it feels to be discriminated against or thrown aside. This is me. This is my life. I live it and do what I want with it. Nature sets the limitations. We set the boundaries.
I'll flap my broken wings and erase it all someday... You'll see.
Monday, 17 December 2012
Actually by the time I noticed this evening, I was well and truly in the midst of a battle and I'm determined to win, rather than get taken to hospital again. I couldn't go back to how things were before, it was draining and depressing to do the 1st time. To get back in to that life would probably be the death of me. I mean, I couldn't fault the work of the brave men and women of the West Midlands Ambulance Trust (I say "Brave" because they deal with so many people, some who are abusive, some who are just plain violent and others who are a waste of time and just wanted a bit of attention and yet they manage to still come back to work and do what they have to to help people) and the staff at my local hospital. In fact, I admire them because they still manage to help you, be it your first time ever or your millionth. I just don't want to go back to that point where I was never out of hospital for more than a few days because it just made me feel like I was just going to be "That ill girl" and it took it's toll on my sanity.
I suppose the next few nights are going to be spent getting to know my tiny new friend and watching him as he grows in to a little character like the other hamsters before him and as he learns to trust me more, I will be able to sit and just spend time with him. Its just going to take a few days before he can trust me properly, but being able to give him a cuddle against me was a start, that and him accepting my gift of a raisin, well both of us gave him a raisin and he seemed pretty happy about things.This morning he even sat and let me give him a gentle stroke and I sat for a little while just talking to him. At least by now, hes managed to stop screaming at me and doesn't seem too bothered if I mess up his bed slightly. Its a process that takes a while and when you do finally win your new pet's trust, its like you wonder how you ever got to that point.
Its been a bit of a varied week, between my asthma being a nightmare, poor weather amongst other things, its been a bit mad around here. Our American friend (well Becky's boyfriend) arrives back tomorrow which will mean that it will all be go in the house for the next few months. Bring it on I say, its a good chance for us all to be happy in each other's company and it's going to be an enriching experience.
Friday, 14 December 2012
I do need that respite every so often because who would actually want to sit there and wallow in despair because of one thing. It may work for some people, but to be honest, spending my time thinking "Woe is me... oh poor tortured soul..." all the time does tend to get right on my nerves and I just want to break out and escape, do something new, something different. I always said that I never ever wanted my illness to be the only thing that defines me. I admit there have been times when I did let this slip, only to become annoyed with myself later because it was like I wasn't being me anymore, I was being this person who only seemed interested in self pity and that's not who I am. It wasn't how I was brought up. And I refuse to make that who I am.
Who I am is strong, she is wise. She is generous and kind. She never makes a judgement on anyone and would give her everything to help the people she cares about. However I do have a dark side, who doesn't? My dark side can be cold, cruel and distant towards people, once someone has gotten on my bad side, that is it and there is no way I am going to be won over again. Once a relationship ends, I don't go sniffing around for more. I always believe that exes are exes for a reason. I believe that everyone deserves a chance to lose it all and start afresh when it's possible.
I'm doing really well again (well mostly, there have been some hic-ups but thats really normal) and its thanks to the people who really mean a lot to me. Its because of these people that I feel strong enough to stand up and be counted and not be afraid of the girl in the mirror. I proved to myself that I am a good person, heck I proved it to myself a million and one times over, whether it was being a shoulder to cry on, someone to research and talk to the right people to sort out a problem or just someone to lend a hand. And as soon as Allen sets a foot back on British soil once more I will know then and there that I had done everything I could to help two friends who are in love with each other to spend as much time as they can together. It's important to them and because they mean a lot, it is important to me too. Everyone deserves that chance to be with the one they truly love and they're loved by that person implicitly.
I always used to look at life in all of the ways that I could have let everyone down, I guess it's true, "The closer you get to something, The tougher it is to see it, And I'll never take it for granted." I never saw myself like that ever before, I never looked at how hard I worked for my friends and how much I cared about the people who made life worth living so I guess now is probably the best time to say it. I may act distant and as though I don't even realise people are there, but I love the people who I have in my life and I am so grateful to have found people who make me feel special, beautiful and worthwhile every day, not just "that sick girl".
Wednesday, 12 December 2012
It's been quite nasty and because we're due for even colder days and the possibility of snow and ice, I think my lungs are deciding that they have had enough of this now. I know I probably shouldn't complain, I mean I know there are people out there who have it a million times worse than I do, but there are times when I just feel so sick of being, well, sick. There are times when I wonder how much more of this can I actually take until it completely wears down my sanity to the point where I am little more than a gibbering wreck. And I will admit that there have been times when I have resorted to a very old habit to just make it through the day. I won't go in to great detail as to be honest, a lot of people would struggle to understand anyway, but I did start cutting as a way to relieve the pressure and until recently it was a common thing and after a while I began running out of subtle places to do it and not get caught. I'm breaking that habit now, but it hasn't been an easy one. To be honest, I was feeling rather embarrassed that something that I used to do in my teens was still my primary coping method.That feeling of embarrassment was really close to the surface when last night when I was in A+E being treated for yet another asthma attack that had gotten out of control.
I never in a million years expected for a nurse to look at my arms and when the Sister asked about the scars, she said "Self harm" almost straight away. I'm not used to people noticing my scars, and usually when they do, people jump straight to branding me as an "Attention Seeker" so when someone sat down with me and asked me what had been happening to make me feel the way I had been and how it had gotten to the point where I was looking for either a pencil sharpener blade or piece of broken glass to drag along the skin. Its not been easy to explain how alone being ill can make you feel and how you just want to scream at the top of my lungs that unless you have it, you just don't GET it. It's not really easy when you go on Facebook and see how much fun everyone I grew up with or went to school or college with are having. Sometimes I wish I was out there with them. Sometimes I just feel thankful that I made it this far through will alone. Simply put, although I know at times its what you would think as the "easy" option, but I am really just too stubborn to die.
I spent years lamenting about the past and time I wasted being foolish and reckless, wishing that I had made the most of everything and done everything I set out to. I always knew I had brittle asthma, that much was made crystal clear to me when I was 18, but those 3 years between when it was easier to live with and when I was 21 and it all just went downhill, and I should have spent every hour of everyday filling them with memories and doing everything I had set out to do. I guess hindsight would have been a fantastic thing back then and I would have known that my time to be a "normal" young woman would be limited, but its never the way things work and I know and understand that now. I think I finally allowed myself to let go of "what if" and just embrace what's important to me now. It's not been easy and there were times when it would have been a easier to just give in. I know it sounds strange but in allowing myself to feel what I needed to and do what I had to to relieve the pressure from making me want to burst. I will admit that it was a self-destructive method, but it allowed me to finally let go of everything and I felt better because of it.
Sunday, 9 December 2012
With the looming possibility of a major welfare overhall, it got me thinking of the human cost of chronic illness. A lot of people don't really understand what it can be like to have a health problem which feels as though it's holding you hostage, not that I'm complaining or entering in to an embittered rant about how much I miss having what would be seen as a normal life. I always said that I don't see myself as the only person to get ill, or one of the worst cases since the plague hit London. I'm not the first. I'm not the last but I do understand what life with an illness can be like.
The common belief is that living with a health problem is easy. This is the belief of the ignorant masses whose day isn't filled with treatment upon treatment, struggling to make do with even simple tasks or just getting by in any way that I can. Not helped by the judgements of people who really are clueless. One thing that always gets my back up is the attitudes of those who say what they think is a harmless comment such as "It must be nice to not have to go to work" or "I wish I could stay in bed all day". The temptation to go mad and rant at them about how they really do not get it at all. I think the worst thing I heard recently was on a shopping trip. These two people were discussing about how they as agreed that it was a good idea to "throw off all those lazy disabled people." Frankly it took all the self control in the world not to go up to them and say "How dare you. You have no idea how difficult it can be."
Another common misconception is that life with an illness is cheap. That would be true if you didn't have to pay for parts for some specialist equipment and therapies, mobility aids just to maintain some kind of independence, and for some, specialist people to help them. In about ideal world these things would be paid for by the primary care trusts but due to limited resources, that just isn't possible for anyone but the most severe cases.
So if you also think that helping the disabled is a waste, look instead at the people who claim unemployment benefits and don't even try and find work. In the USA, you are only allowed unemployment for 2 years and you have to have proof that you are actively seeking a job before you even get a penny. And you know something, the USA have a fantastic work ethic. And no one spends over a decade unemployed just because it's an easy option. And they look after those who can't work because of health problems. How do I know this? Well having an American friend living with us you tend to learn a lot.