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, 30 April 2019

A Chaos Inside Me

Living with brittle asthma is chaotic. You never know what's going to happen from day to day (and sometimes going between hour to hour) and it can often take you by surprise. Like being tackled by an invisible asthma ninja. Or there are times, like right now, where it kind of starts gradually and  can sometimes be helped other times where you know where it goes. It's hard to explain. I have different types of attack. Sometimes it's aggressive and hits hard and fast. Other times it comes on and worsens over a few days. Neither are easy to manage and ultimately mean that I have to rest, take what I can and know when to wave the flag to surrender.

I once read an article on Asthma UK that said about how brittle asthma is like living on a knife edge. And it really is. You're always trying hard to prevent the next attack from happening even though you know deep down that it's just a matter of time. Then there's the worry that though you survived the last one, could the next be the last? I've had a few life threatening attacks and those were the ones that rocked me the hardest. It makes you question whether you did everything possible to try and prevent it. Did you get help early enough? Then you worry about what could have happened had you just gone with the usual plan of neb and see how it goes. It really rocks your confidence. Almost as though you don't know your body as well as you think you do.

People have asked me which was the worst attack I ever had. It's tied between 3.

One happened when I was 21 and I had pneumonia in both lungs. I don't remember much, only saying I was tired and lay down to nap, next thing I knew, I was in resus with 10 people around me and a nurse using a bag to pump my lungs as they had stopped working completely for a few minutes.

Another was a few years later when I called 999 and a paramedic made an error that had it not been for the staff at the Alex I am pretty sure would have been the end for me. Again, remember leaving the house and then waking up in resus with my previous consultant talking softly to me, saying that he could tell I was exhausted as he was more accustomed to me being a lot brighter and more bubbly instead of curled up and asleep like that.

The third was one where it was me and a rapid response paramedic (who was awesome), we waited close to 1 hour for a truck before deciding that we'd go in the car. Apparently I fell asleep in the car and scared the guy. Again just remember waking up in resus, people around me and a doctor worrying that I wasn't getting better quickly.

Sometimes it's hard though. I mean, how do you know when you've had enough? When you live in a regular and almost constant state of feeling crap and exhausted, how do you come to a decision that enough is enough? As a result, I probably do leave things too late, usually because I always keep asking myself "if I went in, what exactly can they do that's different to what I'm already doing?" as I hate wasting time (or thinking that I do, I know it's not a waste but I'm all for preventing unnecessary admissions). Right now it's a case of rest, take the meds and get help if things get more difficult. I'm sensible about it all at least, learned my lesson a few times over.

I'm OK though, just the usual niggling cough and sleeping a bit more but that's not too worrying in itself, I have Jace here too and he wouldn't let me keep going when it was obvious that it wasn't working so that's one good thing really. It's difficult for him too as not only does he have to see me go through the pain and struggle of asthma on a daily basis but he has to know when I'm not winning despite everything I'm trying. I can't even begin to work out what that's like. Anyone who has known me (bear in mind that I have had asthma since I was 2) has probably seen me struggling at some stage and knows how awful that can be to watch. I even filmed it once but couldn't watch the footage as it was distressing, I looked like someone had sucked all the colour from my face and my breathing didn't sound like breathing at all. I destroyed the tape in the end.

It did get me thinking though about the whole thing from another perspective. One that I had never seen before (I had only really seen it from a first person view).

Brittle asthma is scary.
It's chaos.
It's unpredictable.

I'm thankful that people have been on my side with it and supportive of me.

Wendy xx


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