On Accepting the Need for Help

I think the hardest part of going from not being disabled to having a disability is adapting to it. Having to explain to your friends that you just can't do things like you used to is difficult, especially if they don't understand or see the extent of your illness. Asthma is often seen as just an inhaler and you're good but honestly for 2.4 million of us it isn't so simple. To people whose asthma is severe or brittle, it can be hard to just do simple things. On my bad days, even getting up and in to my chair and going to sit and watch TV can be tiring. Obviously I don't think that I have it especially bad, but I think that a lot of it is down to my own stubborn nature that I refuse to give up and let myself get less and less mobile.

Obviously with the plethora of health issues I have, the only way I can guage it is by simply doing things. I don't like lying around all day in bed, I hate being inactive. Yes it is probably easier to let myself get bedbound but if that's what I'm going to let my life be, I may as well stop my treatments and just let my body give in. But I won't because I've come too far to throw it all away now. Besides I'm not a weak individual or someone who gives up as soon as it gets a little bit difficult, I've survived some of the toughest things but the fact that I'm still working towards making my life better is a testament to my personal strength.

The annoying thing is that no matter what now, I will always have my asthma and it will carry on making things frustrating and difficult. Brittle asthma is a really difficult thing to get used to. Imagine that you're stuck under something really heavy and no matter how hard you try, you can't force that air in to your lungs. I'm like that pretty much all the time and I rely on my nebuliser, my oxygen and now my CPAP to keep my lungs in check. My meds and treatments are vital as without them I wouldn't be able to do anything so I make double sure that things are taken and that I slow down. 

I got my actual machine on Thursday from the hospital. I was a little skeptical about how much different to the initial machine it would be, I was finding it exhausting to breathe out against the pressure of my machine (because of the long term damage to my lungs from infections and chronic asthma attacks) which had to be quite high to take my AHI (basically the measure of apnea events per hour, most people have 0-5 events, severe sleep apnea can be anything over to 30 but there are some cases of 100+) from 27 to less than 1 per hour per night. It means that my sleep hasn't been affected by me waking up to start breathing again and that's had a really positive effect on my moods and motivation as well as my blood pressure! It's not an easy therapy to get used to and it does sometimes annoy me but it is what it is. 

The nurse told me that people need to get checked more than they are. 80% of sleep apnea sufferers don't know they even have it, so if you (or a person you know) snores loudly (along with excessive sleepiness during the day, heightened anxiety, fatigue, existing breathing problems like asthma or COPD) get them to get it checked. Otherwise they're risking a whole host of medical complications and they could even die. There's no shame in asking them for help and who knows, maybe there's a way of managing it and improving your quality of life. I've been so much more myself these last few days than I have in months so it goes to show really. 

The thing with sleep apnea is that theres a certain stereotype of sufferers. One thing I have found in going to the sleep clinic is that suffers aren't all severely obese (I'm not skinny but I'm not exactly massive, I have a little extra padding!) and the people have been so kind and so supportive. Even the other patients are really nice and you do get a sense of who they are and their own stories. Since my disabilities, I've met and spoken to all kinds of people and I love to listen and have befriended other patients, because why be a hermit? Why not just take the time to sit next to a scared old lady and read something to them (one lady enjoyed me reading to a patient so much that when the patient was moved to a nursing home, she asked if I could read the rest of the book for her! Then again, who doesn't enjoy some classic literature?).

I do love to read, it's something I've always liked doing in my spare time. I don't usually mind if it's a book, magazine or newspaper, heck I scour the web often for something interesting. Jace and I enjoy our manga books (and we have a lot) or graphic novels (again we have loads, currently collecting the original Transformers comics through a partwork series, £20 a month gives me 2 hardback editions crammed full of colour and stories of those lovely giant robots). I recently read 4 volumes of the original Spawn comics, read some in the past, watched the cartoons and movie and even based a college piece on adapting the "Spawn the Undead" series. Jace has a massive interest in Marvel comics and he shares that with his dad and which is nice and some of the things Jace has shown me are incredible! Our little geeky retreat from the world is paradise to me!

I think that in life we should enjoy small pleasures and make them feel like big pleasures when we delve in. Just because you have a disability, doesn't mean you should quit. I know that now and now I am about to embrace a new chapter in my life, I can't wait to see where it takes us and to of course keep you all updated.

Loves
Wendy xx

On Reflections

I've been thinking about things recently. I think that around about my birthdays I tend to reflect upon everything that I've achieved in the year and the dreams that I'm either closer to or new things to look towards. I think that my 20s was dominated by being stuck pinned down, every time I would do something, I'd be left with this sadness because I'd be so drained for days after and I would wonder whether or not I'd ever be able to do it again. Would I be able to travel to see Jace again (this was before Jace moved in)? I think that being told that there was no cure or that this was as good as it got enough times and by enough doctors just got to me. I have been grieving for the woman I was 9 years ago. Maybe it's because then I had reached a turning point in myself. Yes I would make mistakes as we all undoubtedly do but I think the biggest lesson learned in all of this isn't about how not to make mistakes, that would be impossible, but how to rise above it all and I think that somehow I got the hang of that. 

I think that the important thing that has come of recent events is a new sense of self awareness and self worth that has come from finally getting things back on some kind of track. OK so it wasn't what we originally planned for and there are still plenty of things we need to get on track with or adapt to but that's happening gradually. I think that in learning to adapt to life with a CPAP will be undoubtedly challenging but once I get used to it, it will be as natural as using my nebuliser or my oxygen. I do just have to be patient and keep a positive mindset.

One thing that my machine tells me is how well my apnea is being managed on a nightly basis. I wasn't convinced at first I have to say and I was a little skeptical about it but when I looked on my progress today I was pleasantly surprised. I managed 9 hours, my mask fit perfectly AND my AHI (the measure of how many times you stop breathing every hour) was down from 27 times to just 1 time. That is an improvement and maybe once I have kicked this infection down a bit (another 2 weeks of co-amoxiclav/levo to go), maybe I will start to feel the benefit. It can be a bit annoying sometimes and having to wrestle with a mask that is strapped heavily to your face every night does wear a little thin sometimes. Although one major change has been that my depressive moods have reduced a bit and I don't feel as anxious or on edge about things.

I do wish that my asthma was as easy to control though, I seem to be relying heavily on my medications to keep my lungs from trying their hardest to close and make me feel short of breath or wheezy. I know that is kind of what the life of a brittle asthmatic is like, I was under no impression of it being any different to be honest, but the winter is usually a very tough season for me. I know that I can get through all this and keep myself going, heck I've managed it for nearly 30 years now and I will carry on getting through the little bits and pieces that pop up from time to time. Life may not be a bed of roses sometimes but its worth remembering that it isn't a pile of poop either. It's all about celebrating the little things that make it better, appreciating those little things remembering that things may not be perfect but they're not too bad either.

So, lets see what my 30s have in store for me!

Loves
Wendy xx