Crafting and Life

Its the worst time of year coming up for asthmatics. Winter is always difficult for people with any kind of asthma but for someone with severe asthma like me, it is absolutely frustrating. I know people mean well and going out is a healthy thing to do but for me, going out in winter is just asking for problems due to freezing cold and wet or the fact that it is the time of year where everyone is snuffling back a cold or a touch of 'flu (which for me is more than a slight inconvenience, once that cold goes to my chest I am pretty much screwed really), not to mention the unreliable bus service.

Going out for me means a LOT of preparation beforehand. Where I'm going, how long I'll be out (what medications do I need to carry/oxygen cylinders) and what I need to do. As a result, I don't tend to go out much but to be honest, there isn't really an awful lot that I need to do. I know a lot of people would be all too eager to brand me as "lazy" or judge me for not going out but they really don't know the full story. They don't know that I spend half my time either struggling to breathe or recovering from attacks. They don't know that we are often up in the night because I need nebs or inhalers and they don't see the effects that chronic lung problems leave you with and it is really hard t explain to someone who doesn't know what it's like because unless you have lived a day in my shoes you really don't know. I'm not going to moan and have a "woe is me" post about it but I am going to acknowledge that things do get tough sometimes. 

At the moment I feel exhausted as it has been several days since my asthma has allowed for a good night's sleep. This is not only tough on me though, it is tough on Jace, especially when he has to wake up to put me on a neb and has to see me suffer when things are a bit more difficult (like when my lungs decide that 3 in the morning is the best time to spasm and tighten) and I worry about how he feels in all of this. Thats actually kind of typical Wendy, worrying about the state of others rather than my own condition. Maybe its because it is easier to care for others than to worry about my own condition. Maybe its because I was accused enough times of causing the illnesses of others (I know its shortsightedness on the part of the accusers) but I really don't like being accused of something I didn't actually do. I love Jace and having him here with me has been the best thing for me for a long time. He understands me and knows when I am just saying "I'm fine" when really I'm not.

Currently I have been making sure that everything is as it needs to be. My card making is going really well and producing some lovely results, if I may say so myself. My craft supplies are practically taking over the bungalow though so I am trying my hardest to put things away in a way that is organised and tidy. There is nothing worse than when your craft gear is strewn about and you don't know what is what or where it comes from. I like to be organised and know what I have, how much of it I have and plenty of stock of anything else. Unfortunately the spill over can be an issue so I spent the last week going through what I had, throwing away what wasn't any use to me anymore (which for a craft person is hard to do because EVERYTHING can be used again if you have enough imagination). So far I've made 30+ handmade cards (each with it's own unique design and finishing) and have another 10 or so to finish. I know that they will spread the right amount of joy to the people who get them and I have branched out from my usual circle of friends to others who have made my life better.

The best thing about being a part of a certain community group is that you meet and talk to a lot of new and interesting people. Being a part of Brittle Asthma support and Spoonie groups has been fantastic because not only am I feeling like I'm a part of something bigger and better but I'm meeting and making friends with people who know what I'm experiencing and how I feel. I've made a number of good friends over the years and it feels nice to be able to send them something personalised and pretty to thank them for being... them. My friends are like an extended family and I value people over anything else in this world. There are things in life that are crap but the trick is to not let that get to you and to know that with the right people around you, anything is possible.

Loves
Wendy xx

Its worth it.

Its been a difficult few days for us really. Not because of anything personal or anything like that but because it's been a challenge to keep my peak flow above (or around) 200l/min, usually anything below that is when things get difficult, my best is around 400l/min and anything below that is considered bad. Admittedly since being on oxygen at home, it's been easier to cope with and I'm not struggling as much as I was but then again we haven't been able to get above 250l/min for a good couple of years now unless I've nebbed and been given a ton of steroids. Before I had the oxygen I was unable to even move from bed to chair, each breath I take is never taken for granted. I never realised how much poor lung function could affect my entire body.

Basically if you have never experienced it, it is hard to explain how exhausting it can be. Imagine everything you do taking twice or 3 times the effort than it normally would. Then there's the tired feeling you get with it, like you haven't slept in weeks or months. Its hard to explain to people who don't know that those dark circles around my eyes aren't because of anything other than being so exhausted, and trust me, I have heard some bad ones, including being accused of being a "smack head" which was quite funny actually but at the same time it made me angry because I have never done hard drugs and I never will.  

Jace has been fantastic in helping me with the attacks and pain, even sitting up with me in the early hours while nebs run through (and I am probably falling back asleep usually). The problem with having chronic chest infections is that it can be hard to work out the cause and sometimes you encounter doctors who are so oblivious to how serious things can get. Basically, what I have at the moment is a fungal infection which one of the doctors at the surgery (one who is renowned for being an idiot, I get called in urgently to discuss some bloods and then he dismisses it completely, turned out that I had been anaemic for the past 18 months or so, who'd have thought?) dismissed as "just a bit of thrush" and was "normal". My usual doctor said that when this gets in your lungs its never "just a bit of thrush" and could be dangerous. So its a month of Itraconazole and hoping that it hasn't taken too much of a hold on my system. Last time it was a "if this fails then we may have to look at other options" sort of situation so I really want to avoid that if I can. The fact is, when you only have about 30% of your lungs functioning and at less than normal with gas exchange, you can't afford to mess around with things. I know that something isn't right with my lungs but I just don't feel "that" bad if that makes sense?

It's hard for me to know when enough is enough. I live with this every day, I know the symptoms and what they feel like and I know that I probably put up with a lot more than most would even consider but if I didn't, I wouldn't have a life. My Facebook feed would be constant moaning about being ill and let's be honest, it's an t a positive way forward in life. Does this make my suffering less real? No. It just means that I'm not putting it on others and making them deal with it. I see it in "Spoonie" (sick people, look up Spoon Theory) communities it makes me feel frustrated that people are so obsessed with their illnesses, especially when they have no conditions in the first place (known as "Catfish"). It just trivialises the whole thing. Its hard enough having to deal with long term health issues but when people make it a joke, it's like adding a whole new level of justification to an already stretched situation. I know that you can't always see the battles other people face but when people knowingly outwardly lie, it makes me angry.

At the moment, my aim is to stay away from the hospital for as long as I can. I spent my last birthday in there and I really wouldn't like to spend yet another one in there, especially if it can be avoided somehow. I know it sounds silly but it was a difficult situation last year and despite friends and family, I still felt alone and having an attack that a more demanding patient wouldn't let the nurses deal with was even worse, I have never heard a nurse tell a patient to wait in such a plain way but I am so glad of it because it would have been a rotten way to spend an evening.

All I can say is thank goodness for the equipment and things we have at home.

Loves

Wendy xx