For life's little ups and downs.
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.
I'll flap my broken wings and erase it all someday... You'll see.
Friday, 11 October 2019
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!
Saturday, 21 September 2019
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.
Monday, 2 September 2019
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.
Saturday, 31 August 2019
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.
Wednesday, 5 June 2019
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.
Tuesday, 7 May 2019
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.
Tuesday, 30 April 2019
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.
I'm thankful that people have been on my side with it and supportive of me.