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.

Wednesday, 15 August 2018

Powerful Positivity

Its been hot here. Too hot. Never was one for the heat so this heatwave has been driving me mad, so I've been laying low with multiple fans and black out curtains, keeping the sun out. I've been drinking like a fish but that's what you need to do in this kind of weather. It isn't an easy thing for anyone to withstand, let alone someone with my kind of limitations and issues. Things like going to the loo can be a challenge and my nebuliser and I have never been far away from each other. Being on nebulisers at home has really made so much of a difference because I can handle my asthma a lot better and spend less time in A&E for nebs. Imagine if I had to go to hospital whenever I needed a neb?! I'd never be at home!!

I'll admit there's been times that I would love to unzip myself out of this body and in to a new one without medical problems. I mean it's natural right? No one wants to feel poorly all the time or have to spend hours trying to manage symptoms to have some kind of semblance of a life. That's the thing though with a lifelong condition (or conditions), you are always playing catch up with yourself, sometimes it pans out OK, other times not so much. I wake up some mornings feeling like someone ran over me with a lorry and sometimes that soreness and exhaustion means that getting out of bed can be difficult and I rely heavily on having something to keep me upright. 

My HSP has been getting worse recently too. Basically Hereidtary Spastic Paraplegia is a condition that causes the nerve endings from my spine to my legs to degenerate. I've had it all my life which is why when I was younger, my walking was a bit odd. Not to mention the curve at the base of my spine and the nerves it entraps, previous injuries to my back, arthritis and osteoporosis which make things like walking difficult. My legs are often weak or even numb so it can be difficult sometimes to get up and move around. That and having a pair of damaged and bad lungs can make life difficult on a bad day, throw in a stomach which doesn't close properly and Crohn's making my intestines grumbly, it can get pretty miserable, but only if I let it, which is something I can't do. What does self pity accomplish anyway? I guess though it's about making those bad days at least meaningful in some way and that meaning comes from the little things.they often say that it's the simple things that make up life afterall and thinking less about what I can't do and more about what I can do.

I can't grumble too much though. I just try and keep myself occupied with things like my crafting, MMD and of course gaming. Since becoming a Level 1 Yu-Gi-Oh! Judge, I've really learned more and more about the game and what rulings mean and as a result I feel that I have grown as a duelist too. I enjoyed Yu-Gi-Oh anyway and Jace and I love playing together. When things start happening again soon it'll be great because we can go and do what we love together again. Obviously we'll be careful about the more expensive mats and cards as they need us to protect them and keep them from accidental damage and nothing shows deep appreciation for something more than taking care of it. I spend hours with my decks, preparing them and making sure that only the nice, clean copies of cards are used. Obviously there's some cards that I would be wary about using in case they got scuffed (mainly my Cyberdark Impact secret rare and LART Monster Reborn) as they also carry personal meaning to them too.

It's funny actually, I've always had this thing about taking care of things, even if they aren't what other people consider valuable. True value is in the intangible. It actually bothers me how some people throw money at things to either try to impress or be better than others. Growing up, we didn't have the latest gadgets r expensive trinkets, if we broke something we didn't automatically get another. We were resourceful, something I still take pride in. I have a Sony camcorder, it wasn't top of the range or overly expensive but my family came together to get it for me for my 20th birthday. When it started having issues I was really upset as I've had it for 10 years, so instead of rushing to get a new one, like most people would, I did my usual thing of trying to repair it (which I did). I did the same with my Vita, PSP, laptops. Actually a lot of things have been taken apart and mended. So when the camera started behaving and working again, I was so happy because whenever I use it, it reminds me of my family and the lessons my parents taught me about not wasting anything, including time. Make the best of things.

So, if you take anything from this, let it be that life is short, make it what you want it to be. Don't look for someone to blame, take responsibility for your own life.

Wendy xx


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