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.

Thursday 5 November 2020

Coming to terms

It's been a week now. I woke up this morning, as I have done since it happened thinking "please tell me this didn't really happen, it was all just some horrible nightmare and Nan is safely at home." Then I look at my phone. Reading the call logs from that awful morning. In my 33 years, I have never heard my Mum's voice sound so pained and vulnerable. When she said the words everyone dreads right now that their relative has Covid. And it doesn't look good. They're on "end of life" care. I asked how long, thinking it could be a few days? No, not even that. I wanted to get there. Told not to as it wasn't safe for me, my Mum was losing her mother and didn't need to lose a child too. I sat holding a Jemima Puddleduck toy for over an hour as I cried.

Then outside everything went all calm for a moment. Like the world was paused briefly, it was quiet. It was so eerie. Moments later my phone went off again, normally I welcome the sound of my phone as it's a song I like. This time my heart just sank and I knew. She'd just gone. It was so instantaneous and without any warning that none of us could prepare or soften the blow. I cried most of the day after that. I'd have brief moments of calm, then put of nowhere, it was like a dam broke and there was no stopping until the tears were done. Heartbroken wasn't strong enough to describe how deeply we all felt this. It was like someone had cut off a limb or something.

It also stirred up this deep anger. This virus has destroyed so much this year. It's devastated families like ours and it could've been avoided or controlled months ago. I felt almost resentful towards the people attending illegal raves, tourist spots or protests, the people who didn't adhere to the first lockdown and probably won't adhere to this one, because those people think that they're above the law and can do what they want because it never happened to them or their families. Thinking about how selfish they were and how they contributed to our family's loss. Maybe that's why I'm so angry right now, knowing there are people who choose to ignore the rules and that they're not having to deal with the consequences. 

To be blunt. If you're ignoring lockdown and just doing what you want regardless, you are a prat. A selfish, stupid fool. I know some are staying with other family members during the whole lockdown but not mixing outside of that, that's fine as long as you're not just going between each others houses every day. Please just stay inside and only go out if you absolutely need to. Nothing is worth putting your family through this. Our family is having to say goodbye to someone we love so much and it's a pain we are living with. 

Please be safe out there. 

Til all are one.
Wendy xx

Tuesday 3 November 2020

10 years. Still going strong.

 This post has taken me a long while to put together and get some coherence to recent events. I was planning a kind of grandiose celebration of the blog and the journey it has taken me on. Heck I was even thinking of revisiting the earlier posts and see where my life has changed since October 2010. Then things changed. Then I had to face something that I wasn't ready for. Then again, who would be ready for these kind of things. 

I was having one of those quiet moments of reflection and as often happens, I end up wondering something random. 28th October 2010, this humble little page was born. I wanted to show how I wanted to navigate my long journey of my life and the many changes I faced and endured, the wonderful people who have been there to help me pick through the tougher times and the many MANY wonderful times we have had. It's weird to think that I've managed to keep this going for so long and that it's reached so many people. I'm thankful to people who have reached out to me to say how reading what I've written has helped them, even in a small way. But I also wanted this to show my growth and be a catharsis though diffiuclt times. Writing this blog has been as much about healing as anything else really.

Now this is going to sound really strange but I'm also grateful in a way for everyone who ever made life difficult or miserable for me. Because of them, I learned how to self advocate and not let them win. I learned to be less sensitive. But they also taught me that not everyone is nice so it's extra important to be kind and help those you can help.They taught me to be tough even through diffiult times and to always know that I was more capable than anyone ever gave me credit for. I've learned to survive and learned to thrive but there was someone in particular whose hand guided everyone in the family with love.

Growing up, I was always close to my Nan, Dorothy. She really was a special lady and someone I always looked up to as a kid. She was such a warm person with a kind heart and the kind of smile that filled a room with light. She loved children, growing up us kids were the light of her life, including Daniel, who is 18 years younger than I am, and Richard's children Scarlett and Jack. She took so much joy in reading to us, nurturing each of us to become the people we are today. It was Nan who encouraged me to be creative and showed me how to sew and mend clothes (an important life skill) and how to cook.

One of my faourite memories of Nan is when she used to read to us. She loved Beatrix Potter and I think she told me the stories of Tom Kitten, Jemima Puddleduck and Mrs Tiggywinkle more times than I can say. Along with the original Railway Series and other classic fairy stories. Birthdays were always special and I particularly remember one where my Nan and Mum had made a pony cake for me. But it is the little things I remember well. Something about a beaker of cherryade, a Thomas the Tank Engine VHS (which fortunately I have found the ones we actually had on YouTube) and canned Macoroni Cheese that pulls me in to a bubble. 

With Nan, you always felt safe. You knew you were loved and she would take pleasure in everything you did together. Even if it was something simple. It didn't matter as long as you were doing it together. She passed away last week and our family is still reeling. Just doesn't seem true that someone so close to us could be taken away so suddenly and unexpectedly. Right now, I'm either crying or staring out of the window just wishing I could have one more afternoon with her. I haven't been well enough to go and see her in recent times due to my condition being so unstable. It hurts more that I couldn't be there to say goodbye before she went, but not even being able to go to the funeral due to both the new lockdown and Covid-19 itself. 

So, the takeaway here? Don't take your family for granted. Tell them that you love them. Tell them how special they are. Keep them safe, especially right now. Wear your mask. Don't risk going out during this new lockdown unless you absolutely have to. Because some of you are probably probably think "oh well its never going to happen to me or my family", doesn't mean they won't. And if it does happen to you, may you and your family find peace right now.

Til All are One
Wendy xx

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