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.

Saturday, 16 August 2014

Do YOU Know What to Do?

If you were faced with it, would you know how to deal with an asthma attack? It's something that most people don't have to face and not a lot of people know how to deal with an asthma attack when it happened right in front of them. Shockingly, 9 out of 10 fatal asthma attacks in the UK could have been prevented by better care from medical staff or emergency first aid before the ambulance arrives. Medical staff are complacent when it comes to asthma and it can sometimes be hard to impress upon them when you are having difficulty and getting them to take it seriously (the most common one I have noticed from not only my own, but other people's experiences is that they assume that just because your oxygen saturations are "normal" doesn't mean that your chest isn't tight and you are struggling to breathe, in fact in most cases, SPo2 doesn't drop until the very last minute where things get to "critical" stage). We have had to argue with people to get the right care because people weren't listening to the whole story and only looking at a small part of it.

As I have mentioned previously, my attacks tend to come in stages. Usually you can tell if I am either about to or am starting to have an attack by observing my behaviour. Usually, before an attack, I become very withdrawn and spend more and more time in my room hiding from the world. I become quieter than usual and I tend to leave a "trail" of things I've been doing as I find it hard to keep my interest when my attacks start. I also cough. A lot. And my breathing sounds wheezy and I start gasping for breath because it gets tighter and tighter until I start a nebuliser. Nebulisers at home aren't as common as they used to be, in fact, I am one of a few people in my local area to have one, especially at a young age. The nebuliser machines I have are brilliant pieces of life saving equipment. When I have a nebuliser, I use Salbutamol (Ventolin, blue inhaler) and Ipratropium (Atrovent) every 4 hours. During acute asthma, I have my Ventolin nebs and I usually have a margin of up to 15mg Salbutamol and increase my oxygen slightly to 4l before I have to admit defeat and call for an ambulance. 

Although I avoid hospitals like the plague, not all my experiences have been bad and there have been many times where an admission to hospital has saved my life. As soon as it happens enough, doctors do learn the pattern of your condition and quickly know what's normal and what's not. Even my friends and close ones know what is normal for me and when I am going rapidly downhill and need to either get seen by a doctor or when I have to medicate. Most cases, we can get it settled down with 1 or 2 nebs, maybe some pred and of course pain killers to ensure that my recovery process starts pretty much right away and pain isn't left untreated.

That in itself is a weird one. Not many people appreciate how painful asthma attacks, and the aftermath, can be. If you really look in to the mechanics of it, you are working your muscles hard to try and get the air in, and you do wind up using a lot of muscles that normally wouldn't be used (accessory muscles) around your shoulders, neck, collarbones and your entire ribcage. I have pulled my chest muscles more times than I could count and cracked ribs enough times to know just how uncomfortable it can be, not to mention the pain from the residual inflammation and soreness of your airways after an attack which can be so bad that the only way I can ease it is with lorazepam and morphine (2 very strong drugs which act on the CNS to try and ease pain). So after an attack, it's kind of normal for me to just want to sleep for a while and feel like I've just run 10K.

So, what do you do when someone has an asthma attack? As I said before, I am one of a minority of people who use a home nebuliser so other asthmatics should carry a blue "rescue" inhaler around with them.

1. Try and get the casualty to sit up as much as they can. DON'T lie them down as this can make their breathing harder. Try and get them to take slow and steady breaths.
2. Reassure them. Its a frightening thing to happen so remember to think as scary as it is to a spectator, imagine if you were the one going through it. Listen to them if they tell you something as they have had attacks before and probably know more about whats going on.
3. Get them to take 2 puffs of the "rescue" inhaler.
4. If that doesn't work then get them to take 2 puffs on their inhaler (preferably through a spacer if it's possible) every 2 minutes, up to 10 puffs.
5. If that doesn't ease it or you really are worried or unsure, call 999 and get an ambulance. They often say that they prefer to come out to someone before they get critical than if you leave it too long.

Yesterday I had a lesson in leaving it too long. I kept trying to tell myself I was find and that one more neb would do it. By about 4, it became completely obvious that this wasn't to be the case and I first tried to get a hold of my GP and the receptionist begged me to dial 999 and that's what we did and well I'm not 100% sure what happened but things did get to a "life threatening" state when my oxygen levels suddenly fell and apparently I was in and out of consciousness.  All I really remember was feeling a bit sleepy, and then waking up in one of the resus cubicles hooked up to monitors and machines and with drips everywhere. Scary!! I did probably let it get out of hand because I am just scared of the hospital because some of the experiences of the past. But now I understand how important it is to get help sooner rather than later.

I think that the longer I was away from it, the more I managed to convince myself that this was a bad place. This was a scary place and I was going to be left in pain and not be helped. Nothing was further from the truth which I realised when I had about 3 nurses, 4 doctors and Natt sat to the side urging me on while we all fought. We won the battle but there were talks of ITU and I had the ITU doctor come to see me, problems with getting an ABG from my wrists (4 attempts and even one in my femoral artery, we couldn't get a sample! We had some venous samples but it took several attempts to get my arterial sample!) and my asthma generally refusing to behave itself. It took us a while before I was stable enough to move to a ward but now I am here, I am well and truly on my way to recovery, a bit battered and bruised but I am here and we did win the fight and I'll no doubt live to have many more where that came from.

I guess the next thing I need to do is concentrate on getting better, improve my breathing and infection and then get myself down to my usual 2 litres instead of 8, although I am going to need to keep my wits about me as there is a new patient on this ward, a 94 year old lady who sadly doesn't know whats going on and has already tried to walk off with my Kitty blanket (grrr -MY- Kitty blanket!!), Sephy and my oxygen! Luckily she seems oblivious to my phone and laptop! It isn't her fault but she will probably need supervision so that she doesn't hurt herself (or any other patients) but I know I'll be sleeping with one eye open!

Wendy xx

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