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.

Sunday 22 March 2020

A New Threat.

Unless you've been living under a rock over the last few weeks, you'll be well aware of the COVID-19 virus that has been taking its toll on the world. Seems like a day doesn't go by where we aren't being told about unfortunate souls who are fighting for their lives, and their families' agonising wait for them to recover. Then you hear about the foolish behaviour of panic buyers, food shortages and people not able to get the basics, but it's also been a lot of communities coming together to help each other. The latter gives us hope and solidarity, we need both to overcome this and protect the vulnerable and elderly.

Fear and panic are the enemy. In the modern world of the 20st century, we have become increasingly reliant on living our lives in a bubble, accessed from a screen. We often don't even know who our neighbours are, let alone how they're doing. I do understand that we're all suddenly having our world shaken and it's terrifying that something like a virus is as vicious and incurable (viruses tend to come, have their fling then you (hopefully) get better). I do think the best thing that could come from all this is that we relearn the community spirit and how to help each other that our grandparents and great grandparents relied so much upon, except theirs was a war of munitions. Ours is biological.

People also need to stop stripping every morsel of food from supermarkets. Hoarding all the food, toilet paper and other things (or much worse, selling on essentials at a high price) is just selfish and greedy. It's sad that people are doing this and it's the vulnerable who can't get out much (or like me, not at all) who are unable to get some bread, milk or even food. And who really needs 5 tonnes of canned food?

Right now, the best things we can do is social distancing and self isolation. We all need to pull together and prevent this from spreading, maintain hygiene and protect our most vulnerable people. Make sure that we use the technologies we have to communicate and make use of Facebook and other platforms to forge communities. When the virus is finished, we'll need to pick up the pieces and share what we learned from it. Who knows, your community could be brought back together and we could start helping each other again? 

How good would that be? So, friends, please stay safe and let's all get through to the other side of this!

Til all are one.
Wendy xx

Thursday 12 March 2020

From My Perspective

OK so another thing I get asked a lot is what is an asthma attack like? How do you know when you're having one and how do you deal with it. I haven't really ever gotten completely in to this before as it's a really difficult thing to discuss or describe to anyone whose never experienced it. Maybe a part of me finds it hard to think about things like that as, to tell you the truth, it's not a fun thing to go through and it's certainly not something that I, or anyone who has seen it for themselves, take lightly. I'll tackle my own insight to it by stages, because that seems to be a logical approach. But I'm warning you, this isn't something that is incredibly hard and I've never really talked about the whole process in much detail. To be totally honest its not easy to put in to words and it's taken me this long to really think about how it happens and when we know enough is enough. It's difficult with severe asthma as you're pretty much having what some consider an attack most days. It shouldn't ever be that way, but it is.

Please don't take this as medical advice or instruction, asthma attacks can be different from person to person. This is purely me explaining as best I can about my own experiences. If you are experiencing problems with your asthma, don't delay getting help if it's bad and follow your treatment plan.

Stage 1:

So, at the first points where I'm starting to think "OK, this is my asthma" and where the process begins. Sometimes there's a definite trigger (cigarette smoke, dust, stress and many other things). Sometimes it just kind of happens out of nowhere. Usually with me, it starts with my chest feeling uncomfortable and I could be coughing more or wheezing a bit. Generally it makes you feel quite ill and when it starts with me, I can be a little bit grumpy or just want to be on my own (no one around me means no one to snap at, that's more my own desire to not upset people). I also become quite flitty and struggle to stay focused on anything for too long. At this point it's not bad, just the beginning of things and I tend to try and get it under control. Sometimes it works. Sometimes, not so much.

Stage 2:

It's at this stage that I'm more than sure that it's my asthma and time to use my nebuliser. I tend to use my nebuliser every 4 hours for maintenance nebs (morning and evening with my steroid preventer nebuliser, budesonide) of salbutamol and ipratropium. For attacks, I can have 1-2 extra salbutamol but at this stage we tend to be a bit more on our guard. For the uninitiated, a nebuliser is a machine that pushes air through a chamber where a liquid medication is. The result is a fine mist which I can inhale. The dose is much higher than the standard dose of an inhaler. The thing with nebulisers though is that there is debate among patients and doctors that a standard inhaler, used with a spacer, can be sufficient for most asthmatics but there are some patients who respond better with nebulisers. Just depends on the person. Usually by this point, there's an obvious wheeze and I cough like a 20-a-day smoker (I don't smoke, never have and never will). 

The next part is a bit complicated so bear with me. 

Stage 3. A.

This part depends on what happens with the nebulisers. Obviously it can have one of 2 outcomes. This is what happens if the nebuliser does the trick. I'll sound a lot less wheezy and my breathing kind of settles. The protocol in this case is to take 20mg prednisolone and rest. The full effect of an asthma attack actually takes an awful lot out of you and you feel it most in your chest muscles. Asthma can make breathing really laborious and it is like running a marathon. Imagine your chest feeling like something has enclosed around it but you have to keep breathing, you're going to get really tired, really fast. Often I tend to sleep for a bit, turn oxygen up if my sats say I need to and generally take it easier. If it flares up again then we go straight to the other part of this stage.

Stage 3. B.

So, what do we do when the nebs don't work or I flare up again after treatment? Unfortunately this is the stage where we know we can't beat this ourselves and know we need professional medical assistance. This is when we call 999 and get an ambulance. Over the years  I've built up a strong rapport with local paramedics, they know me and (importantly) they know how bad I get and how rapidly. They know that when they arrive, chances are, I'll be sleepy and probably unable to say much. After a check and they take over with any more nebs or oxygen (sometimes IVs) and we go straight to hospital. It's not that scary after the amount of times its happened and the local A&E are amazing too. Usually the priority is to get me stable and find out if there's (and usually there is) anything underlying like an infection. Usually by now, all I want to do is sleep but at the same time, I get anxious about being by myself. 

Never really understood that. When you're having an attack and it kicks your ass, you are both so exhausted and in so much pain you want to just sleep but at the same time, you just kind of want someone there to get you past the inevitable crash you'll feel afterwards. Unfortunately though, thy usually decide to keep me in for a few days to either get my strength back or start getting over having any infection. 

Stage 4:

The aftermath. This starts with the urge to sleep. And after an attack, I've been known to sleep for most of the day afterwards. It's like my body is saying "thank frick that's over..." and I just want to sleep and start recovering. The only problem is that as I tend to get admitted, I have to do this on a busy hospital ward. Between being in a room with 5 strangers and being visited by doctors and nurses it can be tricky to settle down and get some rest. The routine in hospital is a lot different to being at home. At home I'm able to manage when I take meds, have meals and sleep. It's hard to readjust when you get home but usually after a few days I find my groove again.

So I hope this was informative and interesting for you guys. It was actually kind of cathartic for me as I do tend to keep things quiet unless it's a big thing that's going on. I hope too that giving you an insight to my world a little bit, it will help you understand a bit more.

Til all are one!

Wendy xx

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