The Inconvenient Truth

I think we need to discuss something that has become intrisic to us who are in the "severe asthma" world. Bear in mind that we live our lives in a completely different world to most other people and we often we feel the bite of our condition in ways you could never know, unless you live that way yourself. It's a world where even a small thing can trigger a life threatening attack. Another hospital admission (I've spent a few days here myself this week, not fun) and another fistload of pills and potions.

We walk a tightrope every day and no one seems to understand it. We sometimes think we can deal with a lot more than we can but let's be real. We can't. We are human. We know our bodies and the limitations of them. We may not like it but its our reality.

 When things got bad for me, I had to give up so many things like my flute, my last song on that was one I knew from my Grade 1 and I knew it so well I could play without the music. I sat in my room with it and played this song, the first song played on my even older Germinhardt flute that I had had since I was 10.  Playing my flute always made me feel so happy and I enjoyed it so much, I won't say that I was at the level of James Gallway but I was pretty good. I remember my mum listening like she did when I was a child to me practice, she always enjoyed it and encouraged me with music and art as they were things I was actually pretty good at.

I wonder of course what might have been, who doesn't. I also had planned to go to university to study Media and Film production, for a passion, or even a career in nursing eventually. I had so many plans mapped out for me and so many things that I wanted to achieve. Don't get me wrong, I have achieved an awful lot over the years and I am thankful that at least my teens and early adult years had some normality. And believe me that is something I will always be grateful for. Maybe its not just about what we have to give up on or what dreams need to be pruned but what we do afterwards to replace those dreams and aspirations. You can blame others until the cows come home for dreams having to go on hold or scrapped but it's really down to you whether or not you find new dreams and new things to aspire to.

It isn't helped that the general public aren't really aware of how serious asthma can be. If I had a penny for every time someone has said things like "it's only asthma, it can't be that debilitating", "you were never this bad when you were younger, why is it so bad now?" or (my "favourite"...) "[Insert name/relation here] has asthma and they're not disabled, so why are you?" I know that sometimes people are just trying to help me feel more positive and able, but sadly it just comes across as condescending and it minimalises the condition. Yes, around 2/3 of asthmatics in the UK have asthma that is manageable, allowing them to live normally. But severe asthma is a complex thing, it's difficult to control and no matter what you try, you're always being careful not to trigger an attack. 

For over 2 million people, our reality is that we have to do what we can and often have our lives interrupted as our disease makes us so unwell that we need help or possibly leaves us fighting for their lives. It's horrible.

That's not to say though that we don't struggle with how we feel about those dreams having to die. It took me a long time to accept that things weren't going to be as simple as they were back then. When I went in to a wheelchair after years of fighting like a lion to stay out of one, I will admit that did innitially feel like defeat because I knew I was getting worse but I really wanted to fight it. Admitting that the oxygen was going to be part of things whether I liked it or not and that I need a CPAP to give my lungs some rest and get ready for the next day ahead. It's about assessing your situation and reminding yourself that even if things change in a way you hate, you have to adapt. You have to keep adapting. 

The most common thing I noticed is a bad habit of myself and I've seen it in medical communities. There seems to be a school of thought that makes people think that they can manage more than they probably can. I spent the days prior to the last big attack breathless, wheezing and I was struggling to keep myself upright. I try and do everything for myself because I hate having to rely on others. Maybe it's because that's my nature but I tend to try and do everything myself where I can, it bothers me when people won't do things when they clearly have no reason not to be able but that's a story for another blog. I know that I have a habit of saying "I'll be OK...just one more neb..." Anything to avoid an admission due to my concerns(my ingrained worry that whoever goes with me will mentally punish me for disturbing them or interrupting their games/TV/anything else) and because I've had so many negative hospital experiences (not usually due to staff but more often other patients, particularly one such occasions where an old lady attacked me while I was attempting to sleep). 

I need to emphasise how wrong this is. Hospitals are supposed to be safe places for everyone who needs them. And no one should feel afraid to access help when they really do need it amd less still, people shouldn't delay getting that help. I know this is hypocritical of me to say as I sometimes try and manage everything myself and really the wise thing to do would be to make calls and get the help but I just don't want to spend the majority of my 30s in the same place that I spent my 20s. It's not an easy environment for anyone to be in. In myself at the moment, I'm exhausted. My asthma has been trying its hardest to push me around, relying heavily on meds and trying hard to shift the green muck that has resurfaced. I find things are knocking me about again but there's this part of my mind that doesn't want to give in. Likely not helped by a stubborn chest infection that refuses to go away. 

All we can do right now is keep working with the doctors and do what we need to.

Til all are one.

Wendy xx                                                                                      

Death.

Don't worry, I'm not going anywhere just yet. This is just a post about my thoughts and feelings on then subject. After all, we are all going to have to face it sooner or (hopefully) later, it's a certainty of life. Obviously if you have any thoughts of suicide or anything like that, please reach out to someone, we are all loved and have people out there who will support us!

Right now that's out of the way, let's get in to this. 

Death.

At the end of the day, the sun sets and we rest in the knowing that we've lived another day, yet we know that tomorrow will bring us another day, as it always does. But like the certainty of the sun setting, we also know that somewhere, someone has taken their final breaths and left this world. It's a subject that is sobering and yet incomprehensible. We know it's going to happen to everyone eventually but it's human nature to kind of push it away, bury our heads and pretend it won't happen. We fear it. But we don't understand it.

I've been watching a channel on YouTube called Ask a Mortician. In her videos the delightful Caitlin Dougherty tells us about everything from what happens to our bodies biologically to how the corpse is laid to rest and options for our own bodies after we die. It encourages people to open up about any fears they may have as well as the concept of "The good death". The latter is the most important thing to a lot of people because it's what everyone should want. After living your best life, who wouldn't want to go out in a way that they felt best with? 

But the question is, what is a "good death"? During my recent time in hospital, I was browsing the net and came across a moving story. A man and his wife who had served together in WW2, were married for 70 years (I always find marriages that last that long, you can imagine the things they faced and came through together) and passed away on the same day after spending a day just lying together in their nursing home (the were in separate rooms for a while due to failing health). 

https://iheartintelligence.com/couple-served-wwii-pass-away-on-same-day/?fb=777&fbclid=IwAR0_uTxMS2c8LdmWIgfA6bODvg6Y-DtIEHTHPsJqxH8O1uSIePplOjKtVVc

The full article is here, but I suggest you get the tissues ready. It was a beautiful story. And it made me think, that lady and gentleman literally followed eachother to the end, it was the one thing that they both would have wanted and they got to be together again. I'm not sure what's out there after we die or where we go but I'd like to think that somewhere we go back to who we loved most and from there I'm not sure. 

What I am sure about though is what a good death means to me. Having spent a good amount of my adulthood in hospital, I've seen my fair share of older people dying. One that I remember most was on Ward 5, a lady asked her family if she could be taken to have one more cigarette, her daughter took her in her wheelchair, brought her back and got her comfortable in bed again. They embraced and she left. After she left the lady just closed her eyes and that was that. She died with a smile on her face, no one was jumping on her chest to get her back and running around. It was peaceful. It was calm. It was dignified. On the other side, I've seen families crying and screaming at nurses to resuscitate a dying loved one despite them saying that it was futile, seeing the person connected to everything and unable to even breathe by themselves, heart failing and quite probably a lot of pain. I know myself which I'd prefer.

Again, I'm not going anywhere yet so don't worry. I have thought about what I want for my own death. One of the main things I have always said was if there was a chance that I'd be reliant on machines and unable to do anything for myself at all, it'd be my wish that my family let me go. As hard as that may be for anyone, sometimes it's the kinder solution and I wouldn't want to be in a vegetative state like that. I'd want my final hours to be with friends, family and with Jace and our piggies by us. I wouldn't want to die in a hospital ward with people milling about and who knows what connected to me. I'd want to pass peacefully and with a smile on my face. I wouldn't want to be embalmed as it damages the environment and the people who do the procedure. Instead, I'd want to be cremated and my ashes scattered in my favourite places, including the Arrow Valley Lake. I would also have letters to everyone I cared about saying that no matter what happens I loved them and thanking them for loving me. Instead of a traditional service it would be my request to have something simple, maybe with people sharing a cup of tea and goofy stories, oh and wearing something purple. Happy times spent with them and good memories. 

I guess that's the most I've thought of when it comes to my own death. Has anyone who reads thought about their deaths or planned their funeral? I'd love to hear from you.

Til all are one!

Wendy xx

Tired Wendy = Grumpy Wendy

OK so this is probably going to be a bit of a rant or tangent but right now my asthma is annoying me. It's not the usual low grade poking and prodding kind of annoyance either. This is the kind of annoyance that comes when it takes me a few moments to summon up enough energy to get up and in to my chair or makes even doing normal things frankly harder than they need to be. Team that up with a cough that makes sleeping difficult and then you have the recipe for a rather hacked off and tired Wendy.

Tired Wendy isn't a good thing. When I'm tired, I feel grumpy and don't want to talk to people. There was a time when I would decide that if I was not able to be around others and I would go in to a kind of hiding in my room (this was back when I lived in a room in a HMO and as I was the only one in the loft I was able to just shut myself off, do what I needed to and then recharge enough to want to be around people again). Obviously I can't just do that nowadays and theres always something that needs to be done or sorted so its not an easy option. I don't mind that so much as I am with someone I love being around even when I just feel like a bear with a sore head. Jace understands that sometimes I just need to be by myself and do what I need to and he does what he wants to do as well. It works because we both have

I hate that my asthma still makes me feel this crap. It's been a nightmare this last week and I have still not been able to get a doctor's appointment as the surgery is so busy (as it is this time of year) and I don't feel as though we are quite at "medical emergency" stage. I'm managing, just, with nebs and I have a lot of home equipment at the ready to cope with things, incluiding oxygen and nebulisers. Without those valuable things I would be completely lost. I think I get really annoyed with it sometimes as it can still come out of left field and hit me hard between the eyes. Even getting up to use the toilet can sometimes be difficult, let alone more indepth tasks like showering, hair and make-up. Not that I don't keep trying because once you stop trying, you stop living and there's just no point anymore.

You would have thought that by now I would have been used to such things. It's been 10 years since my asthma got like this and its not been an easy adaptation as I have had to learn rigourous routine of medication and making sure that certain things are in place. I have to arrange things carefully before going out and make sure that everything is set up. A lot of people think that the disability life is easy and that all we do is lay around watching TV or something. I wish it was that simple! I don't mind my lot in life, don't get me wrong, it sucks sometimes, but I know that it could be so much worse.

Maybe that's why I don't tend to moan too much on Facebook. I know that I won't be able to get enough likes or comments that will make this better. It doesn't work that way and to be frank to quote Squall "Sympathy is a burden I don't need". It just perpetuates the feeling and compounds it that its something to take pity on. So when I see Facebook blowing up with "Woe is me" memes and people moaning about every tiny twinge it just makes me turn off instantly. How I see it is that if I was to complain about every single pain, every single cough and time when I have needed to use the nebuliser, it would be constant. And no one wants to see that. I mean, you don't update your status every time a raindrop falls or a car passes do you?

Right now, I think I'll just enjoy listening to the rain falling outside and maybe play on my latest new toy, yeah, I have a Switch now. Currently playing the new Yu-Gi-Oh! game on it and so far so good!

Loves
Wendy xx

New Laptop and Old Infection

So, a few weeks ago, I went to start up my laptop. I'd had the laptop now for nearly 7 years which considering that the avarage lifespan of a laptop tends to be about 5 years was a good long usage life. Well it decided that the Hard Drive had had enough and completely corrupted and stopped working totally. Of course I was a bit put out by all this. Who wouldn't be? I use my computer for a number of different things from art to making my MikuMikuDance videos, gaming and generally communicating with the outside world. My laptop is basically like a way of running my life and things I do. I never realised it but I rely on a laptop more than ever these days. When it broke, it was like I had lost a way of doing the things I enjoy and the way of managing things like my banking or my social media things. It felt strange. Not "oh my god how will I ever cope?" but just odd.

I was worrying though as laptops, like most things out there, aren't cheap. Especially when you want one to do certain tasks. I could have gone down the gofundme or using other crowdfunding options. That didn't settle well wth me. I think things like gofundme are for charity, like medical equipment or helping someone who is dying to achieve a dream or pay for a funeral and not for someone who could easily save up to get a creature comfort. I managed to save up some money and get myself a new laptop from a store online for a decent price. I usually have Toshiba laptops, starting in 2006 with my Equium A100 to the last one which was a Satallite Pro, so it was a new way around by getting a Lenovo Ideapad instead. So far though I am very impressed with this smart little machine and I'm noticing things are working a lot better (its running my games and MMD software a lot more fluidly and with little to no lagging) and its becoming something that I am happy to have treated myself to. And it's already getting the sticker treatment too (Decepticon insignia is a must).

I am glad though that I shopped around before making a choice of what machine to get. I did initially think of getting it from Argos. Then I decided to get on my tablet and research it. What was a good laptop that was under a certain amount and I found something that is twice as good as my old computer was and actually cheaper than my old one was back when I got it. The moral of the story, don't go for the first thing you see. Shop around. Look at specifications and compare. Get what will be able to run and use everthing you want it to do. What I do with my laptop may not be the same thing that someone else uses theirs for.

OK so I did need some talking in to it and reminding that it wasn't selfish to get myself something nice. Strange mental thing I end up with is convincing myself that it would be wrong to get something for myself that I wanted, stems from a low self esteem I think. So I am now once more poised to start making new and better videos, better and more photo filled blogs and if my lungs still misbehave and I end up you know where, I am set there too (I take my laptop and external HDD with me so I can amuse myself with TV series, films and other things to keep myself sane).

As I mentioned though, my lungs are being awkward again. I have just finished a 2 week course of antibiotics (Co amoxiclav/Levofloxacin) and things are pretty much as much as they were, maybe the coughing has gotten worse and I am struggling a bit more when doing stuff. The coughing is probably whats wearing me down the most as its a labourious thing. Trying to cough up the gunge that is deep down at the bases of my lungs and it doesn't like to shift easily because of the scarring and the stiffness that leaves my airways with. It doesn't help that I tend to stay in one position most of the night when I sleep which means that the mucous and secretions tend to pool so when I do actually move its like in a cartoon when a house gets picked up and thrown about.

I'm finding things a bit harder though. Even things like getting up to shower can really be tiring. I managed it with help but it left me feeling tired and pained (my sides are being the worst at the moment as everything is strained and sore. I think we may need to go back to the drawing board on the infection front. There are two options usually, go in (yeah theres a can of worms to open...) or see what home interventions we can try (usually home IVs or something like that). It's not the most pleasant but I would rather try and manage at home rather than lying in a hospital bed where sleep is the most difficult thing to try/

I'll call the doctor on Monday and see what we can do. I'll keep you posted.

Loves
Wendy xx

The Good Parts

So, if you follow me on Facebook, you'll know that I spent the last few months working on something truly unique. Well not at the beginning of the build but definitely during it. I am talking about my Lego Simpsons house (or technically it was the cheaper "Lepin" version as the real Lego ones retail for £200+ and I got my Lepin kit for less than half of that). I really wanted the Simpson's house from the moment I saw it (The Simpsons was something we watched a lot growing up) and even though I had a cheaper alternative, I was very happy.

So the day it arrived in a big box (containing no less than 50 bags of bricks) I was immediately immersed in building. The original version took me about 2-3 days to do but I wasn't happy with a few things, mainly layout and noticed that there were some rooms that were not in the design. In particular, the whole front of the house wasn't really accessible and seemed to mainly be focused on 2 rooms. It needed a lot of reworking. So I started at the bottom and kind of built on the fly a bit.  I think the longest part was planning the shape and devising a floor plan, making sure it all fit together and increased the little details that were so lacking before.

I opted to have a hinge so that it opened out and lift out trays upstairs, each featuring one of the bedrooms with little features like Marge and Homer having a separate bathroom/ensuite set up and the other bathroom respectively. I also managed to recreate Bart's treehouse, a little back yard BBQ set and both the red and pink cars. I still have 3 assorted crates of Lego left for furture builds, so you may want to stick around for those.

I've also been drawing more. Thanks to a new TCG game we've started playing based on our very favourite "robots in disguise" so there's that to look forward to as well as some ideas for MMD videos (MikuMikuDance animated videos are great fun). But I am currently saving to get a new laptop for that as mine, well it's given up the ghost it seems and gone to the great office in the sky. It's kind of sad because I've had that one for 6 years and it's been company for me during some admisspns. But it was starting to slow down and not work as well anymore, these things never last forever but I do try and get a few years life out of what I have.

It's also been 4 years since I met a certain encouragable little guinea pig who I'm very happy to say is still healthy, happy, chatty and generally his usual crazy self. Yugi is our senior pig now. Actually I think having the two younger pigs in with him has kept him lively and happy. He plays a very definite "big brother" role with Marik and Bakura (who towards the middle of the month we'll have had them for a whole year), particularly little Bakura who follows him everywhere, not unlike how Alphonse would follow Patch around. It's both amusing and so cute to watch them together and then watch as Bakura starts to popcorn about excitedly squeaking his little head off. I love guinea pigs because they're so quirky and full of character, after 10 years of keeping them, I'm still to meet any 2 who are the same, so much for people saying there's no personality to small animals.

Maybe having a pet is part of what keeps me going when I feel as crappy as I have over the recent weeks. Along with, of course, friends and family. I'm lucky. I have so many wonderful people and creatures around me that know how to pick me up when I feel down. It's cliché to say it, I know.

Loves
Wendy xx

Resolve.

I know I've been away for a while. I've just been a bit physically drained recently. It's not that I've given up, far from it. I took a small break which only served as a way of strengthening my resolve. I guess this time of year brings up a lot of horrible feelings. And when you have a reminder of that on your arm every day, it's hard to forget how you felt at that stage. I won't go too far in to the story, but those who know me know exactly how a scar on my left arm was a turning point to getting help and that was probably the worst day of my life. It gets a bit gross here so skip forward a few lines if you aren't easy with that kind of thing.

Basically after a huge arguement with someone and generally feeling like I couldn't cope anymore with being ill (this was early on in my illness journey so I guess you could call it my adaptation period), losing ground on the degree I always wanted and other things, they left (don't even remember what we were arguing about) and I shouted after them "people don't change". I was angry with everyone and everything at that point and I really felt like I couldn't go through this anymore. What happened next was a combination of numbness, a rather stupid action involving a huge toothed bread knife.

I then snapped back and got help. I still have flashbacks of that very moment to this day which leave me shaking and nauseous.

It won't ever leave me. Around the anniversary of this event it gets worse and I still get nightmares about it and seeing that scar always reminds me that it happened but it did also remind me of something else. I survived it. For whatever reason, I've been very resilient and have survived an awful lot in my life. I'm fighting all the time but no matter what gets thrown at me, I just can't stop because there's too many people in my life that I want to keep going for. Maybe, even though I felt like it, I didn't really want to die, I just had to open the valve and get help because I really couldn't go forward as I was.

Right now my lungs are the biggest issue but I've been in the ever frustrating zone where I feel like crap and can't really do much but it's not so bad that I need urgent medical intervention. People think being sick is easy. Don't you just love when people assume you don't do much when you're unable to work due to illness? No? Me either. People often make the assumption that as I don't work, I somehow get to live a slothful life of doing nothing and watching daytime TV. It's so wrong though. The truth is, I have a job. It's a very tough job and it's one that doesn't have regular working hours, breaks or days off. My job is surviving. My workplace is wherever I am or wherever I will be.

It's not easy.

It's not always enjoyable.

I do this job using various tools, strategies and things. I have to make calls to the pharmacy to order my meds, chasing them up whenever it goes wrong (this happens more than you would think) and make sure everything is done on schedule. Although if my deadlines aren't met, I don't face a chewing out from a boss. Instead I have to face symptoms that can range between pain or breathlessness. The closest thing to clocking off is sleeping but that doesn't always go to plan as I can find myself spending hours on end trying to sleep but not being able to, then there's days where I'll sleep a lot. I don't think my body quite understands the idea of regular hours. I don't think it ever will.

So please don't be too upset with me if the house isn't perfect, my gardens need doing or that sometimes I'm just laying about doing something simple or quiet. I am trying. It just takes me twice the effort to do normal things and Jace is busy doing all he can to help and still trying to make time for himself too, so when I'm resting or just laying about, that's really what I need to be doing, like charging a battery.

Loves
Wendy xx

Growth

Ever look back on something you posted or said a few years ago and thought to yourself "OK, that's a sign of how far I've come." and then smiled a massive grin because you know you got there in the end? I get that some days when I look back on my Facebook posts, blogs and even if some old emails surface. Life, it's about change and growth, moving on from things and making your lot in life better. In the last decade alone, I have changed a lot of my attitudes and learned how to be an adult, how to make the best of a sucky situation and how to take my own situation in to my own hands and control what happens next.

It's weird to think that over 10 years ago, I was about to move from my parents in to my first ever place. I was living the life of a typical young woman at the time and I was working. My asthma was still a butthole but it was tamable with my inhalers. Life was pretty sweet and that summer was spent doing things I loved. Those few months at Room 7 held memories that I still smile about. When it was just me, Patch and my tiny hamster Zeke, the cold winter where 3 of us all curled up for cuddles, Zeke used to climb up on Patch's back and I'd gently pet both of them while watching anime. I learned a lot about life in the first 2 months on my own than I had ever known in 20 years and it was really a time of emotional growth for me. I learned how important it was to pay bills, buy my own food and do all the things that, up until that point, other people had done for me. It was tough and there were times where I had to juggle my money about but it made me stronger. It taught me to be resourceful and about thrift. Even now, people ask me how I manage to live well on benefits, the answer is simple. Live within your means.

That's the thing about life really! It's a journey that everyone goes on, sometimes we walk together for a while and sometimes we walk by ourselves. We choose the paths we go on and no other can be held to account for bad choices (and trust me when I say this, we all make them but it's what we do afterwards that's the key). It's your choice whether you stagnate or pull your big-girl (or boy, depending on your gender of course) pants, face the good and the not so great consequences and most importantly, learn from it. There really is no point in wallowing. Too many people make the mistake of wallowing in their own situation and become so "comfortably depressed" that they don't make any real attempt to change it, besides it's easier to just blame others in that situation I suppose. But you can only blame others for so long.

I certainly didn't wallow and stay at Stanley Close when it was becoming more difficult for me to live there due to my disability getting worse. To be honest, maybe it was the right time for me to move on as I just didn't suit the area or my surroundings anymore. Honestly though, I can say with 100% certainty that moving to the bungalow has really improved my mental state as well as my quality of life. I love waking up to birdsong rather than bratty kids. I love that we don't hear police sirens every day. It's peaceful here. It's more suited to someone with my limitations and we're both happy as we're together (and have been for nearly 3 years). I feel like I'm finally settled though and don't think I would want to leave here! Our home may not be perfect but it's ours and we love being here.

I don't think that I could have things any better than they are now. But who knows what tomorrow brings? All I know is that if it isn't what we really want, it'll always be what we need. I'm not going to open any doors to the past and I am continuing to go forward and keep our ideal little world going.

Loves
Wendy xx

Gadgets and Escapology

I'm a girl who loves her gadgets. I always seem to have a large amount of them around me and I think it throws a lot of people off when I take out a phone, iPod and tablet, not to mention my laptop. I often get strange looks, especially when I unpack a laptop in hospital and start watching stuff on it. Most of the time people don't really say a lot but there's been the odd time when someone has griped about it to be met with a "I'm sorry but I'd rather have this than pay £8 a day on rubbish TV when there's often little on." Of course I also keep headphones on me too, my favourite ones are the Skullcandy Ink'd buds (mine are pink too so they won't get pinched, along with my over ear headphones, I like pink, so what?) as they cancel out other sounds (shouting, screamimg, "nuuuuuuuuuuuurse!!" etc, the typical soundtrack to a ward) and can make it easier to sleep, even if there's no music playing.

Usually though, if I'm not watching something, gaming or anything else I'm asleep with quiet music, usually instrumental as the idea of waking up and being stuck saying one phrase for the rest of my life doesn't seem that fun (if you grew up with Cartoon Network's Dexter's Laboratory then you'll know what I'm referring to here...). I know it doesn't work like that but could you imagine if it did?! Some of the songs I listen too as well, imagine ending up only reciting lyrics from Slipknot's songs... Even though there are people who would deserve to have me scream at them like a demonic mad woman, it just wouldn't be good. And I don't think anyone wants to hear that really. I mean if you've ever heard my distinctive cough (I had croup when I was a baby and as a result, my cough sounds like a mixture of a bark and like I'm trying to escape a strange mythological creature), it sounds pretty horrendous as it is.

Thing is, my devices are what I use to communicate with the world and help reduce the isolation I often feel when I'm not well. Some days I'm housebound and it drives me crazy, rightly so too. I don't know anyone who would relish the idea of being kept in what feels like a cage for long periods of time, the same 4 walls. It's depressing and I think that at least with my tablet, I can look around and see what else is happening. Find myself some escapism, even if it's only for a little while. I've found that on my bad days I really need the distraction as well as it's not exactly a fun experience to be unwell and not want to do much. Sometimes it helps to just watch a daft YouTube video, binge watch an anime or read a book. It's better to keep your mind busy rather than focusing on the not so nice stuff because that can lead to some really not so nice situations, ones you would definitely want to avoid.

Obviously I still enjoy things like sewing and drawing, Yu-Gi-Oh and the guinea pigs and the day that that all changes is the day I think something would really be wrong with me. The piggies are very much a part of my mental health therapy and they give me something to nurture and raise. They're not just animals to us. They are family. It's weird actually that Yugi will be 4 in July (he seriously doesn't act like an old boy, he's as mad as the 10 month old, Bakura) and in August he will have been with me for 4 years. It's funny to think that he was this tiny little pup when we brought him back to the flat and watching him grow has been so rewarding. Bakura and Marik came to us last year and they're really coming out of their shells and showing us those little personalities. Marik is definitely the one who has really impressed me as he was so shy at first, now he's a lap pig. I think though that's because of the time and energy we've put in to raising him and earning his trust. Prey animals need to learn that the big human won't hurt them. Just lately, Yugi has taken to running up to us when the door opens, it's really sweet.

I think it's the distraction that things provide that make the days when your body is insisting on kicking your backside less difficult.

Loves
Wendy xx

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.

Loves
Wendy xx

Higher Nature - Natural Inhaler Salt Pipe - A review.

Get it here.

Please be aware that this review is NOT sponsored by Higher Nature or their representatives, but an honest review of their product based upon my on personal experience in using it. It also is not intended as medical advice or instructions, if you aren't sure about if the salt pipe is for you, please speak to your doctor, respiratory nurse or anyone else who can advise you.

Background.

A couple of weeks ago, I was contacted by a PR representative of Higher Nature, a website that promotes natual health supplements and complimentary therapies. I'm a big believer in natural remedies and herbal therapies so it was my pleasure to be asked to try out one of their salt pipe products. For those of you who don't know what salt pipe are, they use a special kind of salt, in this case from the Transylvanian Priad salt mines. When inhaled regularly, this can cleanse the airway and help with secretion clearance, something I personally have a lot of problems with. I was excited to try this as I suffer terribly from chronic chest infections due to not being able to cough up the muck easily.

This review will be written over a week and published when its done. I'll be using the salt pipe for 5 minutes 4 times a day (for 20 minutes total, the instructions say 15-25 mins a day so 20 seems fair) and recording my progress. If you would like more information about Higher Nature and their salt pipe please visit their website by clicking here.

First Impressions:

So when I first got the salt pipe, I liked the design of it, the salt is sealed in a chamber below the ceramic mouthpiece. I first read the instruction leaflet inside the box. It felt well assembled and sturdy, not to mention small enough to pop in my bag if I needed to. I found the leaflet inside was informative and knew that this was a high quality product. The only thing I noticed was that it seemed a bit heavy but considering its construction I think that was to be expected, but considering its longevity, I think porcelain is a more hygienic material compared to plastic.

I did wonder how long I would have to use the pipe before I saw any difference so believe that could have been a bit clearer on the leaflet, and I also had to do my own research in to how it worked and any side effects I had to look out for. The weight did take me by surprise but considering that it is porcelain and will last 5 years, it was understandable. 

Day 1: Saturday:

So, I read the leaflet and started my first treatment. It took me a while to get the technique down (in through mouth and out through nose, apparently breathing out the mouth in to the pipe damages the salt), but I definitely did feel the difference, admittedly I was rather breathless at first as I'd been breathing in a way that was different to usual. I also noticed that after using it for the day, I did manage to bring up some rather sticky and unpleasant stuff that had been in my lungs. I also noticed that night (Jace did too) that I wasn't snoring as badly as I do sometimes.

Only downside was that my mouth was a bit dry.

 

Day 2: Sunday:

I started off day 2 with producing a lot of mucous off my chest. My breathing felt a bit less congested on a whole and I found that combining the salt pipe with my other therapies (nebulisers and even a bit of flutter) meant that I was a little more able to clear my chest. I had to consciously remember though not change my breathing pattern too much but still remember to exhale through my nose. My mouth wasn't so dry though.

Day 3: Monday:

Again, started off with a lot of gunk coming from up from my chest. I did notice that after using the pipe before nebulisers, my chest felt a bit sore but that was easily remedied with my meds. The important thing to remember with these "complimentary therapies" is that they aren't a miracle cure and aren't intended to replace your regular medicines. They do however help to add an extra boost to your regular therapies and help you with symptom control. Salt pipes are particularly useful if you have problems with congestion and secretion build up. 

Day 4: Tuesday:

My airways have been less congested, I've found that the best way to use the salt pipe is around the same time as nebs as the airways are more receptive to the therapy. I managed to move a mucous plug that had probably been there for a while and needed to come up. My mouth doesn't feel so dry anymore and I'm not getting a salty taste on my tongue now. I am finding the technique easier to manage and I'm getting something positive from the experience. It seems to work similar to saline nebs but a lot more is getting down in to the base of my lungs.

Day 5: Wednesday:

More of the plugs are shifting, but I don't know if it's causing me to cough more. It could be the salt being a bit irritating or it could just be my asthma being it's usual self. I'm finding it simple enough to do and find time during the day to sit down and with my salt pipe and use it. So far I'm not getting any negative side effects from it and it seems to help when I'm congested. I could definitely find this helpful when I'm shifting an infection.

Day 6: Thursday:

My snoring at night has improved and as I'm not so gunked up, my apnea has improved somewhat. I can honestly say that it's a quick and easy way to help with clearing the mucous from your airways which seems to be the main thing. Less gunk and more lung to use.

Day 7: Friday:

So, I woke up earlier than usual this morning as I needed to cough a lot. This was not unusual for me as I cough more than anything anyway but once I had finished, I noticed that my airways didn't hurt so much as usual after a coughing fit. It seemed that the inhaled salt had calmed my airways a little. I won't say that it was a complete transformation but it certainly was a pleasant surprise. 

Conclusion:

I am honestly going to say that although the salt therapy hasn't been a miracle cure, it's definitely worth a try if you're congested and have trouble with thinning down the mucous enough to cough up, it does feel like it's done something positive but there were times where my lungs found it a little irritating but that could be my lungs being their usual selves. To be honest I didn't know quite what to expect with trying a salt pipe and I did some research on it to see what I was trying. It seems that these are great for people who are prone to infections or have problems with gunk pooling.

I found the pipe easy to use and once I had worked out a technique with it, it seemed to fit in with the rest of the physical therapy devices I use for chest clearance. It was a bit awkward though at first as you have to remember not to breathe out through your mouth while using it so as to not affect the salt crystals inside. Its a really useful additional therapy but you can't just use that and expect to not need anything else, so if you do decide to give this a try (and I recommend it myself) you must take care to take your normal medication alongside it and you do need to keep at it regularly for the benefit to be felt. Also, it can provoke airway spasms so if you do experience anything like that then you must stop and seek advice.

I thank Higher Nature for the chance to try this product. 

Loves

Wendy xx

Journals.

I was having a look through some boxes the other day. It's amazing how much stuff you end up with when you aren't paying attention. For me it seems to be a thing for notebooks. I have a lot of them. And this weird habit of offloading a few thoughts and feelings before moving on and writing something else in another book. It's something I've always done. I used to buy notebooks at school, fill them with randomness and then get another one. It's kind of like journalling but it's as sporadic and patchy as my mind tends to be.

Some of my notes make sense. Budgets and shopping lists, "to do (often dated)" lists and things I need to get for the house. Its by looking at these that give you a vague insight in to how Jace and I run our place and how I keep an eye on things to make sure bills are paid. Then there's doodles, characters points (for my Midgar stories and some other projects) and general just writing down whatever pops in my head (these are usually random rants about things or things I've had to bite my tongue before saying). Maybe it's just my way of making sense of the chaos. Other times it's to alleviate boredom or stress. Other times I write what I think just so that at some stage, I'll be in a calmer mindset to cope with the way I feel about things. Distance and all that.

One thing I did find was from 2012. When my body was starting to get too weak to cope with moving around and I was facing the prospect of being in a wheelchair. This didn't happen totally for 2 years after this but my mobility was getting worse. It's hard to read because the "me" who was writing it seemed so sad. She didn't want to be in a chair because she was scared that it would take her independence away. How I wish I could go back and comfort her and tell her that actually the chair wouldn't limit her, it would liberate her. And it really has. In fact, my nebulisers and oxygen have both freed me from nearly weekly admissions. My life has been so much better with them and as hard as they have been to get used to, it's been a positive thing. 

I do sometimes wonder what my life could have been like but then it hits me, it doesn't matter so much now because this is what my life turned out to be. I don't feel so sad about it anymore, there's times where it feels unfair but it's then when you sit and remind yourself that you are still alive and you are still doing things, even when you can't see that for yourself. I think it is very much a case of what you make it and really the best thing to do is to just move forward, even if its only baby steps to start off with. When I read my old journals it makes me remember that yes things were difficult then but things are never easy when they're worthwhile, but the main thing is that I somehow managed to survive and live to fight another day. Maybe that's what it is. The knowing that you can overcome things and move forward, even if it isn't easy. But show me something in life that was easy that was worth it. No struggle, no way forward. 

Simple. 

Loves
Wendy xx

Copimg With Life.

People often have their own subjective opinion on what being tired is and no two people can say they experience the same thing when they feel tired. For example, when Jace says he's tired, of keansnhe wants to go and sleep. It's hard to explain what I mean when I say "I'm just tired." Because to me, just simply wanting to go to sleep isn't the same thing. I wonder if you, dear reader, have ever experienced what I am about to explain? I wonder what your thoughts are and what it's like to not feel like this on a daily basis.

To me, being tired isn't simple. My body is so physically worn out that even getting up to use the toilet makes me have to catch my breath. I ache. From top to bottom but it's like my body is still going despite that. Often my eyes don't want to focus and my mind can be just as troublesome. My back aches from where my spine is bent. My stomach hurts because it doesn't want to digest food. My lungs feel like they're about half the size they should be (well, my function is about 40% at most with 65% effective gas transfer due to scar tissue and damage from infections and asthma). I sleep a lot but have to use a CPAP machine as my lungs are so tired after a day's work, along with previous injury to my throat, I have sleep apnea, that's actually mild considering.

I'm still trying to keep doing the same things I always enjoyed. I'm still trying hard to have what could be seen as a normal life. It's hard to admit that things like taking a shower or going to the toilet are hard for me. I guess the best way to explain it would be to think of it like a health bar in a game. As a baseline we always get +10 blocks a day. Normally a person would use 8-9, depending on the activities they do. Someone like me who has health problems is different. For instance, for me, I have to "borrow" blocks from the next day and that can really bite me in the backside. So say I started with 6 blocks. I then have to almost ration my day to make it through without needing to add to the deficit. So often, I have to choose what to do and try and make it work. Once you hit 0 you need twice as much to do things so you're forever adding to that "debt" of exhaustion until inevitably, you crash.

Hard. And catastrophically.

Game Over.

It then takes a week or so of doing nothing and not wasting any energy. Usually for me, it means a trip to hospital, usually a massive bump up with extra meds and literally just sleeping. It's only then that I get to restart and get back to normality (or as close to it as it gets around here).

But just sleeping/ taking it easy/ eating better won't make the problem go away. For example, when Jace gets tired, he just goes to sleep and feels better. For me it literally can take days before I can even function at some kind of level. And it's not like I sleep all that time either. Sometimes I have to find light activities to do and make sure that I'm doing the things I have to. It's not a pity party but more of a survival party. One that I still do my best to keep up with.

And yes there are times when I find myself at breaking point with it all. I'm not ashamed to admit that. There are days where I wake up thinking "And so we start again..." and those are difficult to comprehend. It does make my mind to to dark places and it then takes us both to pull me around again and sometimes I do have to have a good cry, a cup of tea (because that fixes everything) and hugs from Jace and the pigs. They remind me that I'm still here and there are a lot more people out there who care about me than I think when I feel that way, my friends and family are precious to me as well.

So, instead of wallowing in my own sadness and all the bad things, I try and keep positive. Happiness isn't something that you should expect. It's something you work towards and do as much as you need to in order to get it. So rather than being negative and moaning all the time, try and think "OK that sucks BUT this is something good that I'm focused on." Set achievable goals. Pay it forward with kindness to a stranger (if you see someone needs some help, do what you can to help them. Even a small gesture like a kind word or a cup of tea and a sandwich for a homeless person can mean a massive amount) and remember that misery isn't a contest, and it shocks me that people treat it that way.

Loves
Wendy xx

Happy New Year

I'll start off with wishing you all a happy new year and I hope you all had fun and enjoyed the festive period. It's been a quiet one for us here as I have had flu for the past couple of weeks and it's really taken it out of me as it usually does. Flu is horrible for anyone but to someone with brittle asthma it can really be awful and it drains you completely. Not to mention that my body has a really weird habit of overcompensating when it tries to fight anything off. And then there's the complications of flu themselves.

This basically results in an allergic reaction. In my case, it manifests itself with hives. Hives are weird as they are red, they're itchy and they drive me crazy. The first time this happened was when I was in school. It was during PE that my friends noticed that the small spots that seemed to be annoying me all day had exploded all over my body. You name it, they had happened, looking like flat topped bubbles under the skin. I was feeling pretty lousy and one friend made sure I got home, told my then stepdad what happened as I went to lie down. At around 5, I remember my mum coming in as I was sat on the floor (can't remember what I was doing) but I remember how swollen my lips were. Luckily it was just a reaction to a virus but it still happens now, almost 16 years later. It's easily managed with antihistamines and bed rest but it makes you feel lousy.

I was determined though to make sure that I was at home for both Christmas and New Year. I really didn't want to spend a festive season in hospital again. Been there. Done that. Would rather not do that again but of course it's meant being careful. Keeping everything to hand and getting enough rest have been paramount but I can honestly say that I'm not having an easy time of it. I'm back on oral antibiotics again which means there's another infection brewing which explains the exhaustion I feel right now. Another danger symptom which has been happening is the general lack of focus on any one thing. This is probably one of the more annoying things as I can start doing something then after a few moments I'll have given up and started doing something else. It's frustrating and hard to understand and even harder to explain to someone else. I did manage to speak to someone the other night but there's not been much really in the way of conclusion or generally determining the issue. I'm not sure myself either.

Other than the usual health issues, things are pretty much as they should be. The guinea pigs are growing more confident, and I am getting to see those different characters come out. Bakura is probably the naughtiest little fluffball I've had in a long time but that's just a little boy being a little lad really. The way his fluff is growing though is probably the funniest as he has a curl on his face that looks like he's been styling himself like an "Emo kid". He's getting bossy towards the others though and often he's the one who starts (and finishes) any arguements. Then when you pick him up, he becomes like a soft little baby in your arms, definitely knows how to wrap me around his little paws. Since adopting the two, it's been great to see Yugi's interaction with them and I've no doubt that this was the right thing to do.

At the moment, I keep falling asleep sat up so I think I'll leave this here and go rest for a bit.

Loves
Wendy xx