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.
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.
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So, here's to a month of good stuff!
Loves
Wendy xx