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.

Tuesday, 24 June 2014

Brittle Asthma and the Reality.

I'm finding it very perturbing that after its been noticed by everyone else that doctors are still not realising how serious asthma is and it's caused so many unnecessary deaths (3 people a day die from asthma in the UK) and suffering to people and their families. There are 2.6 million people with Brittle or Severe asthma in the UK.

I'm one of them.

Had my asthma been better controlled in my late teens and early 20s then admittedly, I probably wouldn't have got so unwell with it. I had episodes where I would be a bit breathless and since the age of 18, I have had asthma symptoms. There was a point where my asthma was better controlled with only 4 medications, 2 of which were in a combo inhaler, and I used to be active and full of energy. A few puffs on my blue inhaler were often the only thing I needed. I used to love cycling, walking, playing the flute and I even used to live in an attic flat. I had my bad days but there were less of them.

I developed pneumonia at the age of 21. I don't think that my condition was ever made completely better because the personal circumstances at the time. As a result the decline began. Soon I had to give up college, then looking for work and here we are now. I'm 26, I can't walk more than a few yards. I'm oxygen dependent and rely on over 20 medications which can mean taking up to 50 pills a day, nebulisers and liquid medications. I use a wheelchair to get about and even after my less than helpful consultant (he used to say asthma wasn't a real disease) admitted I had severe asthma, no matter what was suggested by numerous consultants my GP wouldn't do anything, so I saw a new doctor.

I don't think that until that point we were being taken seriously and by the beginning of this year, I was very sick. I've been admitted to hospital for on average a week at a time, 6 times this year. It's been the hospital doctors who have made the most impact, instead of shrugging and refusing to help, they took my declining symptoms seriously and through that, my life has improved, but I do sometimes find it hard to accept that the damage has been done and that I probably won't ever be totally better without the possibility of transplant when my lungs can't cope anymore. That won't be for some years though yet! I'm not finished living my life yet and quite frankly, I'll always fight to stay here and spread awareness.

I want Brittle Asthma to be noticed, I want to break the stereotype of asthma being a disease which people find so funny. It may be portrayed as the stereotype of either a fat kid who can't walk far or the American "nerd" but I find that so ignorant. People who say "its only asthma!" or "[insert name here] has asthma and they can still work and aren't that bad" or "you're just depressed" are just as bad as the doctors who choose to not notice the severity of the condition. Yes, some people with asthma can get by on inhalers, but the reality of Brittle Asthma is that it doesn't act like normal asthma all the time. No two brittle asthmatics are the same and we never usually fit the textbooks.

I can't even begin to describe the impact this has had on me. I'm so used to doing everything for myself and being able to do what I like when I like. It has changed everything. My priorities are different and I'm just grateful to get the time I get, as grim as that sounds, because I do feel like I'm walking on a tightrope and when my asthma gives me hell, it can be hard to stay on it and not fall in to the abyss below. I go down hill fast and it can be hard to explain to a doctor or paramedic who doesn't understand the way BA works, we can be fine one minute and close to ITU the next and unless someone understands that, it can be very hard to get help when you need it the most. I've lost count on how many times I have gone in and complacency has meant that symptoms are prolonged, I became worse and almost died as a result,

I'm hoping that by my own way of really trying to break the ignorance and the publication of official data and a review of how asthma is handled, both in emergency care and in the community. No one needs to die from asthma, 9 times out of 10 asthma deaths were avoidable, and I think that doctors need to be more aware of the severity of the situation.

Wendy xx

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