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 2).

So, here is the 2nd part to the post I started before. It has been such a long thing to post and I am only just getting my head around things.

So, from where my last post left off, I was on the Respiratory ward (lucky to have not been in ITU as they had originally thought) and I started to pick up considerably after a nights sleep, support for my breathing and some rather unpleasant and painful doses of IV Clarithromycin and IV Co-Amoxiclav (they really wanted to flush the stuff through my system I swear) I think by that point I really had just wanted to go home, the thing in my hand was uncomfortable and always in the way whenever I tried to do anything. I was glad to have a notebook with me because I wrote down a lot of my thoughts and doodled in pen to just try and amuse myself. It did work and I was feeling a lot more like my usual lively self. Unlike the night before when the consultant came to see me and I was so weak I could barely open my eyes or say a word to him. I think what was funny was that this was a consultant that I had seen many times before and he had once upon a time been unsure that I even had asthma in the first place. He'd seen me since after some of the rather rough attacks that landed me on a ward, but even he said that he had never seen me that subdued and unwell. It took any doubt from him on whether or not this was asthma (it is now 100% confirmed as brittle asthma which I suppose is one good thing to come of this whole thing) and that I was lucky. Lucky that the nurse in triage had rushed it through to a doctor right away and that the doctor was quick enough to act. I had mentioned to him about the paramedic and he looked appalled and said that he would have a word with her. I was left with the words "lucky to be alive" ringing through my head and I had had a restless night because all I could think about was "What if..." and it scared me to think about it, and even now I am still trying to come to terms with it all again.

Knowing that has been one of the hardest things to get my head around. I admit I have had a cry about it all, but then I sat there and thought that perhaps this is the kick up the backside I have needed to really remind me that life is precious and the time we have should spend it making memories and a difference to the people we love and if anything, the fact that this could have so easily ended up as one of those creepy memorials in the paper and a funeral has shown me that I really have some amazing friends and a boyfriend who I love and who loves me, as well as my nan, brother, aunt and everyone on that side of the family, and I should focus on spending as much time making memories and making the best of things, rather than leaving it til it is too late or spending too much time focusing on useless things such as hate or the past. The past is the past. It can stay there.

One thing that stayed next to my bed during my entire hospital stay (probably because they kept me connected to it because of how unwell I'd been) was the obs machine. This is a machine that is used to check a patient's pulse, oxygen saturation, and blood pressure. They check these often in the day, and for a while, I was on hourly obs and constant monitoring as I was in the high-care part of the ward (which means that there were 4 nurses in the bay and we weren't ever left on our own) and they still worried that I could drop again. The doctor was doing her best, bless her, to persuade me to have another night in but I couldn't stay in that room with that certain annoying patient constantly bitching about everything. I needed my own surroundings. I needed my own bed. And I needed to be with the ones I hold dear to me. They were my medicine and my home was the hospital ward I needed, and the place I really wanted to be the most. I may have had my Sephy to comfort me, but I wanted more than that. I wanted the familiar smell of lavender from the bed linen, The comfortable surroundings that have always set my mind at ease. The banter between Becky and I was the thing I missed the most, other than being able to tell Jace that I love him and that I wished they could be at my side at that point.

I suppose that one thing that I can definitely commend is that the food at the Alex has improved a lot since the last time I was an In-Patient. OK the combination of quiche and mashed potato (major carbs, no wonder I was so energetic) was a bit unusual, but I didn't mind too much. At least it tasted like real food for once rather than cardboard like it used to. The pudding of apple crumble was pleasant too and the portion size was perfect. I was able to embark on a brief afternoon nap afterwards for an hour or two with a full stomach and the comfort that pain relief tends to bring once it kicks in. I was comfortable in there, but I really just wanted to go home. I was starting to get very homesick. Missing my snuggly boys and Becky was probably the hardest thing about the whole thing. I just wanted to hug them, tell them I was sorry and that I would never take it for granted ever again. And I mean that.

Before I went home however, my cannula, or IV line, (which by this point had been used to give me not only life-saving drugs but ones to kick start me to fight my infection) was really sore. They're not particularly comfortable at the best of times, but considering how hard it had been to get the line in in the first place, my arm was painful as the first attempt had shut down as soon as it was cannulated. The second one was becoming very uncomfortable, I felt a sudden pain in my hand down from where the site was and it was bleeding, at first only a little, then a little blood became a considerable amount and it was starting to leak a little. So as soon as the doctor said "yes" to my leaving the hospital, I was quite happy to finally get shot of the thing. IV cannulas are awkward things, they get very sore very easily and if you are like me, and you have to have them very often then your veins don't tend to like it too much and they tend to collapse which leaves you with that horrible feeling you get when your arm goes to sleep and starts getting sensation once more, but it does save on getting jabbed multiple times with many needles, so I guess it is the best trade off really.

I was happy to get home. Thanks to my friend Martin who came to collect me, I walked back in to my flat to be hugged tightly by Becky who had missed me tremendously. I was just so happy to be home that I didn't get angry that Kadaj had pulled all of Gizmo's back fur out or sad that Virgil had passed away because of the stress from upstairs.

I know one thing now. I am NOT going to take foolish risks. Ever again.

Wendy xx

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