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.

Thursday, 13 March 2014

New Meds?

It's only when I have spent time somewhere else that I realise how much I love my home. From those silly things like the noises the animals make, the fact that my bedroom always has this sweet lavender/vanilla smell, the models and how just sitting around with friends enjoying a cuppa and good long chat about nothing. There really is no substitute to your own bed. Your own surroundings. Your own little "cave" or "nest". When you feel low or unhappy, theres some magic about being able to just curl up in your own bed, cry it out and not have to worry that your emotions could effect the wellbeing of the others in the room.

When I get upset or annoyed about things, I have had this horrible habit of pushing myself back a bit and holding back how I feel. It's unhealthy, I know but it has always been my way of coping. Eventually, when I haven't been sleeping well or have been in an alien environment for a while, its like the pressure gets even higher and I just want to stand in the middle of a room and scream. Scream until my lungs are empty and painful. Scream until someone comes and tells me that it's alright to feel that way. I just want to huddle up in a corner and cry until all the pain goes away and things become "normal" again. When I got upset while in hospital, I spent the day hidden behind the curtain, in my own solitary shell. Somewhere I could just let it all out and not have to worry that someone would see and get upset.

After getting upset, I felt tired so slept for most of the day. I didn't want to eat because I felt so unwell and was in so much pain. But after allowing my tears to come, almost cleansing, I felt better and I felt as though an enormous pressure had been lifted from my shoulders. I started to recover better once I had finally let myself express my deep seated fears and frustrations at having to face illness at such a young age. I let myself feel angry that it had come to this. I let myself feel frustrated that yet again I had almost died and I let myself feel repent for how I had treated one of the best friends I had ever had prior to this because I had become so ill and felt cornered. The one thing that bothered me most when I started being more alert to my surroundings (which took about 3-4 days) was that this had come close and I had never even had chance to tell the people I loved the most just how much they meant to me. Sometimes you have to let it all out to help it all go away.

I'm glad to be home though. As lovely as the nursing staff of Ward 2 are, I am happy to be back home. In my own environment and in a place that feels more natural for me. To me, a natural environment is my home and despite the occasional issues with noisy neighbours and kids, it is where I am able to let my hair down, make a cuppa in my favourite mug and just chill with a DVD or something. I always find other people's "noises" a distraction in a hospital, purely because I am not used to the sounds. But then again, someone else would find the sounds around here distracting, sounds like arguing bunnies or kids running around outside. You just have to relax sometimes and let things wash over you, and remembering that noise cancelling headphones are the best way for a good nights sleep in a strange place.

I do always struggle with being in strange places. After the first few days or when I start to come round a bit, I become more and more aware of what happened and where I am. I find it quite distressing because I am one of those kind of people who when they need to be by themselves, they NEED to be left alone for a while. Being stuck around people and in a lot of pain can make me miserable especially when you just want someone to make that go away, even if its by just hugging you until you fall asleep or taking some time to sit with you and make you feel better. The nursing staff did help there and I was soon sorted out and the best teams to manage my care were informed.

I'm happier now I am back with a respiratory consultant. I had Dr V before and he is absolutely lovely and has reassured me that I won't be losing my home nebs because they have helped me so much and have made such a huge difference. As I said before, I don't think I could go back to stages where it wasn't a case of how often was I in hospital but how often was I home? Emotionally I think it would break me. Physically, I think I would be ready for the grave and I don't want to entertain that feeling again. I am remaining positive because the Carbosistine has started to help me shift the gunk, like Dr M said it would despite Dr P deciding that it wasn't the right medicine for me (I wonder how I would have been had I gone on to it when Dr M suggested?) and didn't want to try it. Well, we'll see what happens in the future and I hope my body will start to improve, I'd love to be well enough to be able to take short walks. But we'll see.

Wendy xx

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