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.
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.
All About Brittle Asthma.
Where do I start. Asthma is one of the most common conditions in the United Kingdom. There are 5.4 million sufferers in this country and it is a figure that increases. According to Asthma UK over 1000 people die a year from asthma, and every 8 minutes someone is admitted to hospital because of it. Those figures are set to rise every year because no one really understands asthma and no one really thinks it can be bad or hard to manage. There isn't a cure and there is a lot of people who have asthma and are not being managed properly. It is a condition that MUST be taken seriously and it is something that needs to be understood.
Brittle asthma is one of those conditions that unless you have it, you may struggle to fathom what it means for 2.6 million of us in the UK. It's a condition that few understand and even fewer even know about and it's something that can change your life significantly within a short space of time. It has been my constant companion for 8 years (only really getting to the more worrying point in the last 4 years) and has been a deep learning curve for my friends, family and even to me.
When you ask somebody about asthma, it is common for them to automatically think of the blue inhaler and sometimes even a brown one. Hegemony puts most asthmatics on "Nerd" characters in TV and sitcom situations. Asthma affects all different kinds of people from all different walks of life and as varied as the sufferers are, the cases of asthma are pretty varied too. No two people actually have the exact same symptoms, triggers or care plans.
Asthma as a condition is based around inflammation of the airways. This inflammation can cause breathlessness, shortness of breath, wheezing, coughing and and any number of other symptoms because the airways are trying to close up and make it harder to shift air in and out. During these attacks, patients have to take medicines to relax the airways and regular treatments with steroidal medication (usually inhaled, unless there has been an acute episode or the patient needs to use steroid tablets on a long term basis) to damp down the inflammation and theoretically make symptoms easier. Sometimes the use of inhalers isn't enough and some people have to take various other medications like phyllocontin, nebulisers and even some sub-cutaneous infusion to ease symptoms. For some people it can be an easy condition to live with and manage, for others it can be debilitating and medication routines can sometimes feel like a full time job in themselves.
My asthma is catagorised as type 1 brittle. This means that I am privy to severe attacks that come on very quickly (sometimes I can be fine one moment and the next, just fighting to breathe). These attacks can escalate rapidly from just being out of puff to life threatening situations. I have been in hospital with my asthma more times than I can count (or care to admit) and for the last few years (for a number of reasons) it has become a huge part of my life, fitting in treatments and all of my medication (sometimes I have to take up to 30 pills a day, on top of nebulisers, inhalers and who knows what else) as well as still trying to maintain an independent life in the middle of it all. It can be extremely frustrating and tiring, and sometimes I am so exhausted that I can't really do normal things like going to town and shopping. This is why I have to use my mobility scooter to get around and do things. I have had it now since October and the difference that it has made in my life is impossible to put in to words as it has been so brilliant. I feel like I can happily go out again and live my life without having to worry about what I'd go through later.
My life can sometimes be characterised by days when I feel symptomatic and sometimes I don't notice that things get out of hand because as I have said before, it is hard to distinguish between levels of crappy. Sometimes I don't realise until that last moment when things are about to go so far downhill that I'm already on what I call a "treadmill" and there are even some events where I have come closer than I would like to admit to losing my life. It's only after these things happen that I really manage to take stock of things and sometimes it helps to reflect on what we could have done better at that point.
I have learned to take each day as it comes. I have learned that there is more to life than material gain and I have learned how easy it can be to give up and how it takes a lot of personal strength and fortitude in order to pick myself up, dust myself down and figure out a way to make it work. I know some people would say that I was delivered a rubbish lot in life, but at the end of the day, rather than sit there and wallow in self pity, I still get up and go about my day. I use the things I have to use (things like my nebs and my scooter(due to my asthma and various other conditions)) to get through the days and I am happy, not that I have the illness but that I am able to still be me, regardless of the obstacles that are in the way.