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.

Thursday, 1 June 2017

First of the Month

One thing I often have to explain is what "brittle asthma" is and what it means to me. People with asthma tend to have flare ups of symptoms and generally feel OK in between that and that is how it is usually perceived, "it's ONLY asthma...". The truth is that for 2.6 million of us in the UK, we experience what people get during flare ups but its more of a daily way of life. You become reliant on steroids, despite the vicious side effects like weight gain and mood issues (OK so it isn't exactly helpful when you have bi-polar disorder on top of that) and not being able to sleep properly. You become reliant on nebuliser medications, which at times can be a complete inconvenience, or an annoyance if such meds are needed in public, especially when there are small children around who can't help but ask questions, although some of the questions are hard to understand for most adults so I don't even know how an 8 year old would understand. There are things that even I don't understand and I live with it!

Sometimes you even need oxygen at home to help you cope with day to day life which can add an extra level of complexity, going out you have to check that you have enough oxygen in your cylinder for the time you will be out for, tubing (don't even get me started) and making sure that everything is set up properly. Asthma to me has been a difficult thing to work out but somehow I've managed it and through conscious effort and thought, I've not allowed myself to be a victim of circumstances, instead I have chosen to thrive, although there are still things that do throw me for a loop but that is OK too. At the end of the month, I am starting with CPAP to help with my night symptoms and desaturation, I feel a bit uneasy about it still, I mean it is still a huge thing to get my head around and its not surprising that I am a bit worried about how this is going to work.

My asthma is complicated, as are many of my conditions. It is hard to explain to someone who has never been there that it means that often, I find simple things like getting up to move from my bed to my chair or going to the toilet exhausting. I still try however and I still fight because I can't give up because of this.  I choose not to see this as something I "suffer" with, instead I choose to simply "live" with it. I know you're probably wondering what the difference between the two is. Simply put, it's all down to how you personally see things. By saying that you suffer from something automatically makes it a huge negative and something that does nothing but make you miserable. Whereas by living with something is more positive as you're actively choosing to live your life in spite of the condition and the limitations it tries to impose. Because let's be honest, people are too focused on the negative aspects of life that they forget that beyond the things they don't like there are so many wonderful things out there and they get totally​ overlooked.

I'm not saying that we shouldn't acknowledge the bad stuff, that would be foolhardy and would make the lessons they taught us rather moot. We all have good and bad days. After all, it's the good and bad experiences that shape us as people but I personally think that many people focus too much on the bad stuff and forget that there are some wonderful things out there and it's a shame really. I do get annoyed when people moan about something that is completely trivial but maybe to them, that trivial thing is a personal disaster? I don't know. I think that some things are best kept out of the public domain, personal stuff should be personal because you don't know who could be looking at what you put online or whether or not you're being unintentionally offensive. I am just glad that someone who was posting my personal info online now no longer has access to that information and I am making sure that they NEVER EVER will (and anyone who knows these things is sworn to secrecy as well). 

Of course I know there are people out there who are genuinely struggling and have a lot of things that I couldn't ever comprehend, yet their posts are often the most uplifting. For me, I love it when people use their energy to making art or doing something to make the world a better, brighter place. One of my friends crochets to help her, another friend likes making cards and me, well I love my sewing. My sewing is something that gives me tangible, tactile proof that I am still doing things and I am still trying to put my stamp on things. I work on many different things at a time because when it comes to long term projects, it can get a bit tedious working the same design day after day and sometimes its nice to give your mind a break from it, as I said previously, it is important to give yourself some "you" time.

I sew, draw and write to give myself a break from the world around me. I do it to channel my negative energy in to something positive and something to be proud of. My favourite work by far has to be the Sephiroth cross stitch and I am so proud whenever people ask me about it. I worked for 3 months on that, often from the moment I woke until the moment I went to bed. It comprised of over 13,000 hand sewn crosses in over 70 shade variants and colours, thread mixes and types. I did kind of pull out all my tricks and fancy threads for that and it was worth it, every stitch. When I framed it, I couldn't stop looking at it and thinking about how much work went in to that. I have a few bits planned for the next few months but I don't want to spoil them, but I am working still on my season trees and theres a few other things that caught my eye and are definitely going to go a way to brightening up the place, along with a few other things we're planning on to make the bungalow OUR home.

So, here's to a month of good stuff!

Loves
Wendy xx

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