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.

Monday, 22 June 2015

Jumbled Thoughts

When I found out that they were remaking Final Fantasy VII I found it incredibly hard to contain my squee-ing (must have sounded like some kind of wheezing guinea pig!) but it led to one of a few more recent decisions for both myself and Jace. As I say, I am not going to reveal anything yet until I know what's what and a bit closer to the time. My life is going to change and I believe it will be a good thing. I believe that it will lead to our happiness and heck, it may even lead to better health on my part. I am a little uncertain of things, more to try and quell that pessimistic side of me but it is more my concern than anything else. There is always going to be the worries in the back of my mind, (I mean, how can there not be?) but they aren't the lead thought process that goes on. Yes. There is a chance things could go wrong but that is kind of the way with anything isn't it?

When I moved to Redditch I was only 16. I know at that age kids think they're ready for the big bad world and that now they've finished school, they're all grown up. How naive I was. I didn't know what love felt like and I didn't know what it would be like to be hurt more than anyone had ever hurt me before. I never knew how badly my body could betray me and I didn't know much about life in general. I did have to learn the hard way, but I think it allowed me to grow. I don't regret ever coming to Redditch and I found myself out here. There are things that went bad and there were things that happened which ultimately meant that the person I came here to be with and I grew apart. These things happen and sometimes it is a painful part of maturing and becoming an adult. Not every relationship ends with a fairytale. I'm just glad that things with Mike ended before we hated each other, but despite it, my connection to the family is still very close and I owe Mike's mum Shirley a lot because she was someone I looked up to as a youngster growing up to be a woman in my own right.

When I spent a gap year back at my parents place in Stafford, I think it opened a lot of old wounds that I had prayed would have healed. I had to face the one thing that I was running from when I moved to Redditch. I was running from my past and still recovering from something that even now tries to rear it's ugly head. Growing up, I have always seen myself as "the fat kid". I think being told from a young age that being fat means you don't get the same love and compassion that everyone else gets. As a result, after my weightloss from a grumbling appendix had left me a mere 8 stone, I trained myself to think that my body only needed a certain amount of calories and that I should live on 1 meal a day and drink loads of water. At one point, my weight was just 7 stone and when I attended my aunt's wedding, I remember the tears from my nan because the prom dress I wore (which I had filled nicely under a year previously) now hung over my emaciated body. I was taken aside by a cousin that night who gave me a stern lecture and told me to put weight on before it was too late.

After a while I think I did managed to find my pace again and when I moved out of my parents' in to my own place, my first ever bedsit in Ivor Road, I think that was the day I took control and said "This is my life and this is how I want to live." I loved my place and I remember before I moved out, I went out for a little while, just so that I could go back in to the place I had called home for 9 months and just lay on the old sofa, there were a few bits of stuff we hadn't moved, including a kettle, my tea bags and a mug. I got some milk at the shop over the road and I spent an afternoon just sitting there quietly. I've since moved and now I live in a different part of Redditch. I have been in this flat for 4 years and it may be a crummy little place in a crap part of town, but I put a lot of myself in to it to make it my own. It is my home but eventually, I will have to leave it. I know this and it will take a lot of searching in both looking for a new home and in myself to find the strength and courage to get through all this.

I know I won't be alone in this. I know that to be happy, we all have to make an effort. We all have to do things we aren't sure of to start with but when we just make the leap of faith, it is worth it. I have asked myself questions over and over and have realised that Redditch and I are probably going to say goodbye to each other. I am sad to plan on leaving Redditch as there are some people here who have made my life so much fun and I will miss the friends who are like family to me. It sounds silly but when I leave here, I am also leaving someone else behind, but he can't follow me where I go next even if there is a part of me that wishes I could hold him one last time. I am talking about my Patch. Its been 3 and a half years since he left but whenever I went to the corner of the garden, I know hes there. I know he would be telling me to keep going in the way he did and he would want me to be happy.

I know people say that "it's just an animal" but my pets are never that to me. Patch was my friend. He was my confidant and he often tried to be my nurse as well. From the early days of when we used to both curl up together in my bed at Ivor Road, especially that winter when it was so cold inside and outside. To the days spent with him on the sofa behind me, just nibbling his hay or coming for warmth and love. It's true, not all friends walk on two legs, but we all love with one heart. Pets are like angels who only come to us when they know they're needed and when they leave us, they know that they did what they were put here to do. I'll never forget any of my animals and when I do move on, they will be a part of that and I will move with them (although I am hoping to rehome the rabbits to be honest so that they can have better lives).

As for now. Well I have to keep fighting and keep trying to move forward. I had a call this morning and to be honest, I am still so angry that I'm shaking. Even the woman on the other end of the phone was shocked at how the medical directorate had tried to sweep this under the rug. The thing is, I refuse to let it go under the rug and I refuse to stop fighting until I know that this will bring about the most important thing of all, change. I want to change how some doctors perceive my condition as it has been well documented that a good number of doctors refuse to take asthma seriously. The problem with this is that so many people die because their attacks were never really dealt with properly and 90% of them could have been avoided. This still kind of scares me and its only now that I am coming to terms with everything else around me that the gravity of my condition is well and truly the scariest thing I have had to work around.  It's probably my biggest hurdle.

Over the next month or so, I will be undergoing more tests, assessments, reviews and other things to ensure my best care for the next year or so. I don't know exactly what happens now. Maybe we can fix a number of smaller issues and then the bigger ones can be dealt with in a more effective way. Fixing the perforation in my septum and the deviation will get rid of that constant nasal congestion I seem to get on the right side of my face. Remove the wisdom teeth that rub against the side of my cheek and cause painful abrasions. Sort out all my organs so that they all work in harmony again, rather than me feeling constantly like I am either going to be sick or in so much pain that I can't really eat or drink comfortably. If I can make my body easier to cope with and less painful, perhaps then I can improve my chance of survival and possibly make sure that I can keep on living after its all fixed and sorted.

Its been a year since I found out the true extent to my disease, I just didn't take it in until April time. Maybe its because at my age, I want to plan the next fun thing to do, not have to worry about the people who I care about and when I do eventually have to leave them behind.

Wendy xx

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