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.
Sunday, 31 May 2015
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.
Saturday, 23 May 2015
Well, Natt has finally taken the plunge and is now settling in his new home. I wish him so much luck, love and happiness as he is, and always has been, a very good friend who is now finding his feet. He still has a lot to move but once he's got carpet in his place, I am sure he will be happy to reunite himself with his stuff. The main part of the living room is now as empty as it used to be. I am planning to redecorate so I haven't completely moved myself back in yet, although I have been testing a few things and seeing what works for me. I have found out that I can very comfortably use my wheelchair to get around (which is something that is very much appreciated and something I am delighted with) which will help me make the most of things.
The one thing I am really trying to do as much as possible is dusting my shelves and the models that live on there. My models are a HUGE part of my room and I have spent many years collecting them. They are personal collection and a great deal of them have been customised by hand. I do the custom work as a hobby mainly but there's a great sense of achievement when something is finished. Pictured is my first EVER model, a Final Fantasy VII: Advent Children Play Arts Sephiroth. He's been a part of my environment for the last 7 years and it was a pleasure to give him a little makeover. Admittedly I was working the eyes with the point of a cocktail stick and used a rather nice blue hue to make his lips seem more alien and creepy. I loved working on this, even down to dry brushing silver and white in to his hair to make it seem more realistic. The result is something I am very proud of and I can't wait until I do my next custom work. Probably looking at more of my FF7 collection, maybe the Static Arts Sephiroth statue? All I can say for now is watch this space.
Last week was also special as Jace was here. I have to admit it was the best feeling in the world to be together with him, it always is. You know, even the small intricacies of my illnesses bother me less when he's here. Its safe to say that his patient, gentle nature is one thing that is so wonderful. It gives me confidence and I feel like I am still a human being instead of a file. Under all the tubes, stuff and meds. It was wonderful, even if we didn't do anything huge, it was great because we did it together. He makes me happy and its something I know I deserve to be.
I've been spending short periods in the living room to get used to it again. I'm not afraid of it but I did get used to only being in one room so everything revolved around that. Being out of the bedroom has probably been the best for me. It wasn't that anyone was stopping me but I often would leave Natt to it so that he could have what little privacy I could offer. Close quarters is a frustrating way of life after all and I completely understand how frustrated Natt was getting because he had no place where, if he was in need of it, he could find solitude and that in itself would have driven anyone mad. Not helped when he was sharing a space with a rabbit with severe bar biting problems! Loki seems happier now though that he's in the living room and is being interacted with more.
So, what's next for me? Well, I have upcoming appointments in July and am planning to get away for a few days to Blackpool in the next couple of weeks. I'm also going to be spearheading the decorating of the living room (after 4 years, it needs a revamp) and generally making my home the best it can be as well as reassessing how I use the place to make it flow more easily because how I use the flat now is different to how I used it 4 years ago. My mobility needs have changed, a lot (started off with using a crutch to get around, now I use my electric wheelchair) and I need my home to reflect this and to be as easy to access as possible. I'm also working with my carers to make sure that I am cared for physically and emotionally.
That's the thing with carers though, people just think that all the job is about is going in and being treated as servants. There isn't always a large amount of personal care for my carers (washing, dressing, laundry and other things) but they do make sure I've eaten, drunk and am generally comfortable. But there's something else they do, something that isn't always appreciated, in fact some carers are treated awfully (but those cases aren't in the news like the minority of carers who abuse the trust of clients, they are a minority compared to the rest of them) and it is so rare for a "please" or "thank you". That thing is the general comfort and friendship that we don't always remember. My carers have always been friendly and care for me with dignity and respect. They become a part of the scenery and I appreciate them so much for it. It is because of them that I can live alone.