For life's little ups and downs.

A rather quirky, funny and sometimes daunting look in to the life of someone who has a lot of health problems but does their best to keep positive. Punctuated by guinea pigs, anime, superheroes, transforming robots and cross stitching.

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.

About Me:

A blog about life. I live with Type 1 Brittle Asthma, Bi-Polar Disorder, Obsessive Compulsive Disorder as well as Various Allergies, Neutropenia, Crohns Disease (my IBS was rediagnosed as Crohns), Osteo and Rheumatoid Arthritis, PCOS and Osteoporosis and Heredetary Spastic Paraplegia. I have recently also been diagnosed with Sleep Apnea (which makes me stop breathing in my sleep) I live with these conditions, but I refuse to let them keep me down and out. I still try and make the most of my days despite being so poorly and having to rely on my wheelchair, nebulisers, nearly 50 pills a day and 2l/min of oxygen and CPAP.

I'll flap my broken wings and erase it all someday... You'll see.

Sunday, 18 May 2014

Easy Sunday

Its another bright, sunny day. And yet again, I dragged my poor carer out for a walk because I can't seem to sit still. I just feel so damn alert and with it! Its been so long since I was this aware of the world around me and before, I had this kind of listless, sleepiness about me. Like I knew I was somewhere, I just never cared as to where. I never realised it before. Maybe it was because when you live for so long in one way, you stop noticing the effect it has on you. I never noticed things like attacks because they were just "one of those things" and they were bound to happen at some point. I was so poorly and I didn't even know how or why and what scares me most was how much I just soldiered on despite it all.

It was kind of like when we got the old bed out and the new one in. I had gotten so used to it that I never noticed how bad it was for my back and how much the damn thing stunk! I can understand why it smelled the way it did and it was old even when we got it, but it did contribute a lot to my poor health and the subsequent consequences of that. The wood inside was rotten and when it finally gave way, it was probably a sigh of relief. I thought that was going to be the biggest change to my life and  that only small things were going to happen. OK so I was wrong about that. But I am glad that I was wrong because these new changes have shown me that I can still enjoy life, even if I have to do so with some equipment and other things to help, it's OK.

Admittedly my enthusiasm got the better of me and I did manage to tucker myself out a bit. Not sure how it came about but I went to watch something on my laptop and kind of fell asleep. I must have woken up at some point because I had taken of my cannula and turned my conserver off (basically the best time for me to have "cannula breaks" is when I'm sleeping, so I have my o2 off at night and well, it makes sense to take it off if I'm going for a nap, unless of course I have been really struggling). I'm getting used to using the equipment and well, I find some of it really clever. The conserver I have for example, it is a nifty little gizmo which builds up 50PSI of pressure and releases oxygen when I start to take a breath in, delivering the equivalent of  2l/min without wasting 2/3 of my tank through continuous flow. I think it's a clever thing and its how I have managed, over the course of 4 days, only used 3 of my cylinders in 4 days. Of course, I will be calling up tomorrow to have some more delivered soon but I am getting used to it all. I think it has been a learning curve for me and well. I think it has started to change my life for the better.

Being on oxygen, the last 4 days have been amazing. I have been drawing again, going out during the day to do things. I have been so much more alert and aware of the world around me and I noticed just how much happier I have been. I forgot how much we take for granted and how much we miss it if we can't do something anymore. People have been so kind to me while I have been getting the hang of my illnesses and how that have changed my life, in some ways for the better, others not so, and how people have helped me with simple things, whether it's holding a door or helping me with my shopping on the back of my chair. I was scared that people were just going to stare at me and make me feel even more like a freak when I went out and it was such a shock to learn that it wasn't going to be like that at all. Every so often, I got the slightly embarrassed "sorry I didn't notice" look when I ask someone if I can just slip past, but no one made nasty comments or gave me filthy looks. I was, and still am really happy of that.

I'm learning to just let things be as they may and accept that the past, as "fun" as it would be to wallow in the whole "he said/she said, he did/she did" bullshit, I have better ways of spending my time. I find people who just live their lives to wallow in their own misery are pathetic and people who only ever just try and blast others because that is all they have are just tragic. People who will never be happy because they won't let it go and let themselves move on. I just keep moving forward because, well, I have to.

Wendy xx

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