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.

Tuesday, 18 April 2017

Better Spirits

I'm in better spirits today, even though my chest doesn't seem to agree with me. My asthma is being a bit of a nightmare for a couple of days now and I've been having to use my nebs more than we would like. It reminds me that I'm lucky really to have the things at home that I have. Being able to have nebs and oxygen at home has been a game changer really because before I had them, I was having to go in to hospital every few days and it did get very annoying for me because I just wanted to give up at times. One positive thing to say is that our Little Red (real name Gizmo II, we call him Red as a reference to Red XIII from Final Fantasy VII who is a a bit ragged and looks like he's been through the wars, this poor little chap has definitely been through a lot in the first few months) is getting more and more confident and a lot friendlier over time.

My Mum and her Partner Dave brought this little one to me just after Christmas last year after we lost our Kaiba-mop and we had to spend  time introducing him properly to Yugi and he's definitely put some weight on and is growing up well. Its only a shame that his ears will never grow out and he will always have a slightly shocked expression. He was a bit skittish at first but when I first held him, he just settled and nuzzled in to me. 

It's hard to explain the situation when someone has never been through or seen it themselves. It becomes almost second nature to me and I know the warning signs from a mile away. The problem is when you're so used to it but your significant other isn't as sure of things as they haven't really dealt with something so scary and how powerless it can make a person feel. I can't even imagine what it feels like​ on the other side of the situation. Its hard enough that you know​ that the pain you're feeling is upsetting someone you love because they can't just make it go away and they have to wait for it to go as much as you have to wait. Jace is very patient when it happens at home and knows what to give me to make it easier. There are times when even though we did everything by the book but my asthma was just too difficult but that is the nature of brittle asthma. For me, it's usually difficult because I live in an almost constant state of pain, struggling to breathe and being exhausted so I sometimes find it hard to identify when it's worse than usual. 

It's like a looming shadow. You know it's there and you know it's predatory, waiting for its chance, but it strikes without warning when you least expect it to. Often luring you into thinking that you have it under control and he worst is over for now, or so you think. Then as soon as you least expect it, or when you are just trying to do something completely mundane (like getting up to go to the loo or having a drink) and then it hits like being kicked in the chest by a horse. You cough, you wheeze and eventually things get so tight that you can't even breathe and you have to go and use the Nebuliser or ask the question "is this getting any better?"

The moment when I need to ask for help is the scariest thing for me. I don't rely on others easily, maybe its my nature or maybe its because so many people let me down when I needed them, I don't know but I have always tried to sort my problems out for myself. So last night kind of came as a bolt from the blue. I was struggling but I didn't feel like it was "hospital" bad. So I did the sensible thing and called 111. Basically, long story short a lovely doctor came out to see me, very quick and very professional in his conduct and yeah, I have yet ANOTHER chest infection. So it's probably going to be one of those "take the antibiotics, feel crap, stay in bed, feel more rubbish, sleep a bit more" kind of routines as it tends to be. I am working on something at the moment but its going to take me weeks or even months to get this done.

I have to say that I have always liked the idea of patchwork quilts. So I am making myself one. I've got some gorgeous soft pink fleece to line the inside of it as well as ideas for some special patches that reflect life and everything that makes me tick. And butterflies. Such beautiful and amazing little creatures, the way they flutter after spending time hidden away as they develop from a caterpillar and then emerge in spectacular colour. I also love the way they feature in cultures from all around the world. One of the most beautiful in my opinion is the idea the Native American legend that if you tell a butterfly your deepest wish, they will carry it high up in to the heavens and have it granted for you. I love that.

Also today, I had a wonderful email from Healthline that once more my blog has made it in to their top asthma blogs for 2017. This always makes me feel proud because I started this when I was in such a different place emotionally (and physically) and its my readers and supporters who have kept this going for me. So THANK YOU! to everyone who reads this and everyone who follows and finds something that helps them in their own journey. Also, you should check out the other blogs too, its nice to read other people's insights in to their lives and their emotional strength is something to admire

http://www.healthline.com/health/asthma/best-blogs-of-the-year#1

So, that's enough from me for now hopefully things over the next few days will be a bit more positive.

Loves
Wendy xx

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