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.

Friday, 8 March 2013

Photos from the Ward... and Beyond (part 1).

One of the ways that I keep myself sane while in hospitals is through photography. I find that if I am strugging to SAY what's on my mind, I find it a lot easier to just SHOW it instead. I believe that photographs take a glimpse in to the real life events that unfold around us. Some people photograph things like animals or landmarks from their adventures. Me? Well I photograph everything that seems to make sense in my silly life (I call it that because it can sometimes be easier to think of it in that way rather than referring to the lack of quality of life I am afforded these days) and show people what it is really like when you have to live with a sometimes painful and often frustrating health problem. Be warned, a lot of these photos are very candid and show a very dark side of my life, and you may find some of them really upsetting. Some of them I don't actually remember ever taking which is the weird thing.
I guess the first pictures came just as the doctors started me on nebs and oxygen. We knew I was bad, but one thing we never knew was just how bad things had gotten. I look at this picture now and I can see just how exhausted I was. Yet there I was, putting on this brave face and telling myself that I had to get through this. I looked at the end of the couch that I was lying on and all I could see was that tank. At this point was when the doctors were getting the trolley to take me away from where I should never have been in the first place. All I could hear at one point was the doctor asking the sister who I think in turn probably gave the paramedics a grilling about why 1. I wasn't brought straight through (there were trolleys in the corridor, but they would have rushed me right through to resus had they seen it right away. No one could work out why exactly that was not the case and the worrying thing is that had I waited a little longer (or later until a doctor came which was what the paramedic wanted) what would have happened?

All I was thinking that whole time was about the people who I love. That gave me the strength to keep going and get better. Their smiles when we were all together and the glorious days where we all just hung out eating pizza and talking about this that and the other. I wanted to get through this. I wanted to survive to have more of those golden days, more of those mornings of drinking satin smooth coffee with Becky and the evenings spent just laughing about everything.

The next pictures came during an arterial blood gas. It's a painful but really needed thing. The doctor had to find the pulse at the radial artery before using the needle to slip between the bones and get the blood sample. It took 2 attempts for them to get the right spot and the nerve was hit (I was probably making some strange whimpering sounds at the time). Little did I know, but this was the beginning of a rather exhausting chain of events. A chain of events that I am still doing all I can to get my head around it.

The next picture came I think (as the clock says 3:30) not too long after having my chest X-ray (They used the portable thing, even though the tech was reluctant to do it that way because he didn't want the hassle of moving the machine, luckily the ITU doctor stood his ground) and I was lying there, just observing it. I only wish I could have got a better and more clear picture of it, but I think by that point I just wanted to close my eyes and sleep for a while, yet through it all, what makes me proud of myself is that I managed to keep that brave little smile and positive attitude that people know and love about me. I guess I'm just that kind of person really, but I did just look so tired and fragile at that point. I think I probably did fall asleep for a while and got some rest. I lay there for a while and I think when I did fall asleep, I felt so calm after my pain relief was sorted I was breathing more comfortably. I started to believe that I was going to survive this. And I wasn't going to give up. Not for anything.

Not long after I was moved to the ward, I was having a neb and decided to ask if I could try using the nasal cannula instead of that bulky mask that was making me feel claustrophobic and uncomfortable. I did find it funny that I was wearing both the nasal cannula and the nebuliser mask at the same time. I think I may have tweeted this picture with some kind of silly caption like "it's all about the accessories, darling!" The nasal cannula stayed there all night and I took it off in the morning because I felt strong enough to go without. The black and white image was taken after I woke up from the nights sleep, so I look pretty refreshed and not as sickly.

I guess those are the first ones I am willing to share at the moment, I'm going to share the rest later on, but it may take a few days to try and gather my thoughts and lose that feeling of disorientation and confusion. But I am doing better today which is good. I'm still a bit disorientated but that is something we come to accept when we live our life with a long term health problem. The next lot of photos will be a bit more unusual and theres a lot of them on both my phone and iPod so this could take a while.

Wendy xx

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