It's taken nearly 2 weeks but bit by bit the living room is really starting to take shape. I took a big step today in having all the animals moved in to there, rather than having my guinea pigs in my sleeping quarters. My bedroom will be just where I will sleep and maybe lie and watch films on my bed days. Not only has this been a change in how I live but I have also been having a good sort out and get rid of things that are useful for others but I wasn't using. It's not an attempt to palm my rubbish off, its just a case of if its there, not being used then it's wasted and waste is never acceptable.
Being back in my living room again has been interesting because well, I'm still not used to it. I spent the last year practically living in my bedroom so as to be out of the way, particularly when I wasn't feeling well. When I feel ill, all I want to do is lie in bed and sleep. So that's all I'll do. Because of my condition, I do tend to have days better than others. On the good days, I can be quite social and happy to be outside. But recently I have had some pretty low days.
It's one thing to have a condition that is lifelong and not really be able to do much about it. It's a completely different thing to have a condition that is hard to control and in the words of the doctor at the hospital "is unlikely to get much better than it is now. In fact, it only gets worse unfortunately." I have had to reassess everything about my life and what I aim to achieve from this. I know that it isn't just one condition but a combination of different conditions. I have severe, brittle asthma, this is a certainty. The other problem I have is pulmonary fibrosis, and unlike my asthma which we could control with medication, this can't be reversed. This is a "forever" thing and will gradually get worse as I get older until my lungs are at the point where I will need new ones. Without a transplant, I could be looking at 5-7 years, but I am clinging on to hope that we can get some treatment earlier so that we don't have to face the harsh reality of it all. I don't even want to think about it.
The one person who I do worry about the most is my mum. My mum is going through something that no parent ever should and she still does it with courage and love. This has been especially hard for her I think because we didn't start talking properly until a year ago and she has seen me in hospital. She has watched me fight for breath after moving from my bed to a wheelchair and she knows exactly what is going on inside this body of mine. She has been a rock of support and is always there when I need to talk or a bit of a nudge forwards. The horrible truth is that until my lung function drops enough, I am kind of free-falling and waiting for something to happen and trying to stay optimistic that something will happen and the result will be a good outcome. I can't just let myself accept the fact that things are as they are and I don't feel ready to throw in the towel just yet. I do sometimes feel like the doctors have given up with me because my case is so complicated and its hard to figure out.
I'm not ashamed of who I am, my conditions or my past. I have plenty of wonderful things going for me and despite the odd one or two, its been great to have the support. People are always going to judge what they don't see for themselves or what they don't understand. People are always going to make assumptions and believe those outweigh any basis in reality or fact. I'm not even going to go in to a lot of the "but you're only young" attitude that seems rampant. Yes I am young but I am still poorly. I am still fighting this with every ounce of strength and I will continue to do so. I have purpose. I have conviction and I have courage to keep myself strong. Most of all I have wonderful people around me and a reason that I want to keep going. Who knows? Maybe one day I will ride off in to the sunset for my "happily ever after" but I won't forget the lessons all this has taught me over the years. Being brave and strong, even when it seems hopeless. Loving someone and being loved in return. Who I really am as a person has come through my experiences and one day, I hope to publish my story in a way that it can reach people and even if it only ever helped one person to overcome the obstacles in life, then I know that I have been successful.
2 years ago