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.

Saturday, 17 May 2014

Defying Gravity

It's really been a lovely day today, nice to have a roll around the market and watch the buskers (there is a talented kid who plays guitar on a Saturday and I take great pleasure in hearing him) as well as other performers (there was an event in town today with a choir singing). I love stuff like that because it reminds me of how alive a town really is. Whether that be with people performing, children playing and generally everyone being happy and enjoying the lovely May sunshine. When the sun is out, it seems that everyone seems more cheerful and well, things feel so much happier.

Over the years, I stopped being such a social person. Unable to face the fear of having an asthma attack out of the house or having the energy (or puff) to actually go out and do things. I had become a bit of a hermit and for a while, I did develop agoraphobia (due to reasons, I don't really want to get in to) and became afraid because everyone saw me as this beaten down "nervous girl" who was constantly walking, head down and trying to be as invisible as possible. I then just became someone who spent most of their time either hiding in the bedroom or sat watching everyone go by from the window. It's not a happy state of being and it certainly isn't as pleasurable as going out and meeting new people and doing things I can enjoy. I don't have anything (or anyone) to be afraid of anymore and I feel confident that as long as I have my chair, my nebuliser and my oxygen tank, that there is nothing I can't do and nothing I can't enjoy.

The things in life that threaten to hold us back, be it from illness or environment are things we should try and work around. I remember once when I was at one of my lowest ebbs, a good friend reminded me that life isn't measured by the things we do for the sake of doing, but the things we do because someone told us we couldn't. That person is still walking (albeit with a cane) despite being told that around 20, he would be wheelchair bound due to his arthritis. I didn't believe it back then. I didn't see that there was going to be a light at the end of the tunnel and that there was something we could do. I let myself suffer because I was too afraid to challenge the people who told me "this is it now." and that no other options were available. I had to make a noise and tell them I wasn't prepared to lay down and take it, going higher from an underling to speaking with one of the hospital's leading consultants.

My consultant (Dr L) has been such a wonderful help. He came to see me on the ward a few times and told me what his plans for my treatment were. He told me that my body was basically wearing out and after years of chronic asthma and repeated infective exacerbations, my lungs were only recovering to a certain point and that they were starting to fail on me. The end result was that I was alright, as long as I didn't try and do anything. Which meant that even simple things like going from the sofa to the bed would leave me tired, gasping and my SPo2 (the saturation of oxygen in my body) was dropping to around 89%-93% depending on what I was doing. You can only imagine what that was like from a "Quality of life" standing. Part of the reason I wasn't blogging much at that point was that I really didn't want to post "Well, today I was in bed all day because I couldn't even move from one side to the other" or "I am in so much pain right now..." because that sort of thing really is depressing and to be honest, I wouldn't want to read it, let alone post it so that others would have to (and the people who get off on the idea of me suffering, why the hell would I give them the satisfaction?).

I am hoping to start moving forward with life and enjoying it to the fullest. Things are a little uncertain still but I see that as something to overcome, not something to define me or make me miserable. I don't have to accept limits because someone says I have to and in a way I am glad that I went through some of the things I did, because it made me that much stronger, wiser and able to cope with things. Nothing makes you stronger than having to live despite of limits. You just have to be careful and responsible in finding out what your limits are and keeping within them. I won't be running a marathon or walking to town and back, but even if it is just wandering around the house or going to town in my chair, that's something.

Wendy xx

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