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, 16 May 2014

Life is for the Living.

After being home for a day, it has to be said, it feels good to be home again. I never realise how much I miss it until I get taken out of my home environment for however long it is. Its always the little things I miss as well, like lying in my own bed, long relaxation in the bath or cuddles with my pets. I am prone to homesickness when I have to be away from home and I always feel a bit wary about going in to hospital (usually because of previous occasions which were very stressful and the memories of which are still kind of painful to this day.) but this time around I do feel like things are changing and I am moving forward again and although there have been so many setbacks and things that have shaken me deeply, I think I am making progress.

One of the worst things about being as poorly as I have been is that I am pretty much limited in what I can/cannot do. It's not easy to adapt to living with a disability for anyone, but when you go from not having any disabilities to having a lot all at once, it can be really scary and it is normal for someone in my shoes to sink in to depression, heck I know I did. I tried ending it many times because I didn't think I would be strong enough to carry on, it was only when I thought about how others cope just fine, I couldn't help but hate myself for being so selfish and wasting what life I still had and I had to do something important in order to recover, I had to remind myself of everything I'd overcome in the past and accept that the way things are is simply the way things are, some things you can change, others you can't. And sometimes you have to just take it as it is. 

I went out with my oxygen for the first time. I was nervous and worried about people staring or making nasty comments. Ignorance makes people cruel and there are people out there who judge others and say nasty things or glare because it's easier than trying to understand. The daft thing is that if people ask me about it, I will explain it. I'm not on this through choice or for any other reason than my respiratory system is damaged and is slowly failing. There may be something we can do eventually, but until then, I'm making the most of my time. Out of my whole time out and about, I encountered so many people who smiled politely and were understanding (as well as a lady with such a sweet little boy whose smile was infectious). I only crossed paths with one disapproving glare, tutting and that was all. I think my confidence is growing more and more with every day.

It was nice to wander around and just enjoy the day. Usually it runs me down, even with the chair and I'd have to sleep to regain my strength. My focus has improved too, turns out that when my levels drop too low, I become unable to think or concentrate on anything, I become sleepy and because it takes so much effort, I was pale, clammy and felt like I was constantly having an attack. It just felt like I'd had all my energy sucked out of me and I do think that had a negative effect on how I was feeling. The problem was that I had gotten so good at pretending that I was fine and I think it became harder to deny it. The weird thing is that we didn't need to ask or push the doctors to help. This was decided by the doctors on Monday and I was told that I was going to be going home with it and during my active hours, I have to use it. I don't sleep with it though and I take it off when I'm not really doing anything. 

I've heard horror stories of people being given home oxygen and wearing it 24/7 against what they're told and it causing more harm because they didn't need it. I guess a little anxiety about new treatments is normal, having known that a lot of treatments are a "one way" street and once they start then that's kind of it and it can be a slippery slope. I think the main thing though is that I am still alive and I am still pushing to be as happy as I can be. Be that with a little extra help.

Wendy xx

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