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.

Tuesday, 26 November 2019

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                                                                                      

Wednesday, 23 October 2019

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

Friday, 11 October 2019

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

Saturday, 21 September 2019

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

Monday, 2 September 2019

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

Saturday, 31 August 2019

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

Wednesday, 5 June 2019

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

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