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 Bi-Polar Disorder, Obsessive Compulsive Disorder as well as Type 1 Brittle Asthma, Various Allergies, Neutropenia, Chronic IBS, Osteo and Rheumatoid Arthritis, PCOS and Osteoporosis and Heredetary Spastic Paraplegia. 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.

I'll flap my broken wings and erase it all someday... You'll see.

Monday, 9 June 2014

Appointments...Appointments...

I love meeting new people and making new friends. I especially love it when they tell me the horror stories they heard from one person. I find it so funny. How one person can be so pathetic that they have to guild the past with stuff which is 100% bullshit and is so inaccurate that it makes no sense at all. I suppose everyone needs a hobby and if it makes them feel better then that's fine too. Anyone who asks me will get the truth, 100% verified by the friends who were there and saw the reality. They saw what happened and one friend watches the fall out every single day and the impact it had on my life. I got fed up of being timid because of what one person could say, people say things. It's what they do. You just have to find the funny side of it, relax and enjoy the time you have.

Life is precious and we only get one shot at it.

I'm always surrounded by friends and loved ones. We stick together and support each other. There's something fun about being with people with the same interests as you. Even if we are just chilling with a sub or walking (or rolling) through town and having a snoop. Right now, I am in to my Yu-Gi-Oh! cards and I love playing the game with Jace and other friends. Jace and I spent hours going through all the cards and building some decks. Right now I'm using a Cyber Dragon Warrior deck I made. I love the strategy and playing turn based games really helps you learn to think several moves ahead and I enjoy the challenge. I'm not exactly the best duelist but I learn new strategies all the time. It's a lot like life in that way. Sometimes you have to take stock of what's going on and figure out a way around the challenges. We have the cards we need, you just have to be sensible enough to use the right cards at the right time.

I've spent the last 3 years sorting out my affairs and making sure things are sorted out. I understand how my conditions could kill me at anytime, without warning. I know this. That's why I'm trying to pay off as much as I can (which is going well) and making sure that should the unthinkable happen, the people I care about are looked after and my animals will be cared for. Its not exactly pleasant to think about "end of life" but when I was started on my morphine and my oxygen, they made it clear, there may not be much we can do to make me well, but we can make my life at least comfortable. I won't give up, maybe one day they can cure my conditions or repair the damage to my lungs and I won't stop hoping for that day, even it looks hard, its worth doing. Nothing worth doing is ever easy.

Sometimes you just have to take stock and appreciate the little things. Whether it's a snuggle with a loved pet or spending time enjoying yourself with friends. We love spending time going to the cinema, although the last couple months, we haven't been able to, we do try and go and see a film together once a month. It's nice to take a break from monotony and go and see a film, nibble some popcorn and relax. Having time to do things, normal things.

I had a consultant's appointment today. It has been most illuminating in some ways but it did confirm the thing I always knew deep down and probably didn't want to believe. Years of near constant chest infections and an almost constant state of an asthma attack has left me with damage that we can't ever repair or make right. They call it pulmonary fibrosis. It means I have less surface area in my alveoli to do gaseous exchange. This does mean that I am going to be on oxygen for at least the not too distant future. I saw my respiratory nurse from the hospital and the first thing she said was "Wow! You look so well!" I think it must be so rewarding to see someone go from being so poorly all the time, and believe me, I was very poorly, to having a simple change making so much of a difference. Since being on oxygen, I have been myself again and I maintain that between it and my nebulisers, my life is getting better. Even if my home is now as kitted out as a hospital or clinic. 

As long as I can spend more time doing the things I like, rather than being stuck in a hospital ward or waiting for the next attack. The sad thing is that had this been picked up and acted on sooner (I.E by a GP?) then maybe I wouldn't have to be in a wheelchair or on oxygen, but I guess we have the good news that my immune system is actually pretty OK. It's everything else that seems to be having trouble keeping up. This isn't a hard luck story. This is the bare reality of what life is for me now. I deal with it because there is no point in walking around playing the "victim" all the while. I don't feel sorry for myself and I don't want people feeling sorry for me because I am making the best of things.

Loves
Wendy xx

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