Home IVs, Infected Lungs and Hernias

2020 has already had an interesting start. My chest has been really unpleasant as of late due to a really bad chest infection, probably a flare up of the deep-rooted one that colonised in my lungs about 4-5 years ago. Not exactly sure how long it's been brewing. Only that it never seems to go away completely or stay gone for too long. My asthma becomes more wild with infections as well so it's so important to get them under control sooner than later. So we decided to up the ante a bit and go for 2 weeks of Tazocin (piperacillin and tazebactam, 3 times a day via intravenous injection) home IV.

Home IVs are tricky. Depending on your preference, the district nurses can come and give you your injections or infusions as needed, or you can be taught to self administer. I personally prefer to self administer as I know how busy the nurses are and have always believed that if possible, one should manage their own care as long as it's safe to do so. Obviously the only thing they can't teach is how to insert an IV cannula yourself, that requires someone who is trained at venipuncture. Cannulation is the trickiest thing with me, my veins run for it as soon as the word "needle" is said and when they do get access, they don't like to keep it up for long and they collapse. So this makes it a bit more difficult. But still beats being in hospital.

On Tuesday last week, 3 attempts and a blown vein later, we got access but it lasted about a day before collapsing again, which meant a bit of the dose actually went in to the tissue of my arm, that was rather unpleasant. My arm bulged up like a balloon! Yes, that hurts as much as it sounds like it would, my left arm is bruised, very bruised. So Thursday morning we had to try again. This time we got one after 5 attempts and frustration for both me and the nurse. So we had a big decision to make. Go in to hospital and let them treat me OR go to Bromsgrove hospital on Friday and get a midline put in. We decided on the midline.

It was a first time for me to get one of these inserted. Basically a midline is a bigger, longer cannula that goes in to the upper arm where the veins are chunky and more reliable. For scale a normal IV cannula is about 2-3cm long, this thing is about 10cm long. To have one put in, you need to be in a clinical treatment room, complete aseptic environment. They use ultrasound to find the vein and they use strict sterile protocol (surgical prep, gloves, drape etc). The skin is numbed thankfully so it's not exactly painful, just uncomfortable and a bit weird. To be honest, I'm glad I went through with it, despite being a bit scared (yes it does happen and I do get scared when we have a new challenge to face) and needing a small Sephy plushie to squish (I took the mini one). It took 3 goes but when we were in, we were in and it's been so much better. I think this will be added to my protocol for home IVs now. 

I'm about halfway through the course now and it has helped me so much. I'm shifting the rubbish that's sat on my chest for a while and I'm a lot perkier. I know that I don't stay infection free for too long but I'm hopeful that this time it'll be a couple of months and we can get me as well as possible for my hernia operation. Speaking of, my hernia (called Fred-Bob-Jim) is still there like some kind of demented eyeball poking out of my belly button. It's so weird. It hurts too. So I'll be very happy when that gets a shove back inside my tummy where it belongs. 

Til all are one

Wendy xx

Hello 2020

My body. It is a strange, complex thing and it doesn't like to cooperate at the best of times. It likes to remind me that even if I love some kind of food, I can't eat it unless I was planning to spend hours doubled up with bloating, wind and the kind of "toilet" issues that can only be described as explosive. It likes me to know that my lungs are overly sensitive and liable to go in to bronchospasm at a drop of a hat. It tells me if my nerves are upset by making my legs flail about like a fish out of water and they're not supplying my lower body properly so I can't really walk anymore. I know my physical health is often a bit of a tightrope and I have so many different conditions that operlap and aggravate each other. Not to mention that I have mental health problems to boot.

I'm tired. But it's a kind of tired you can't explain. Not a tired you can sleep off or take medication that could fix easily. It's a complete, full body exhaustion. Your body feels like someone has replaced your blood with lead, it's heavy and dull. It's horrible. Its knowing that you probably won't ever get completely better and you have to keep pushing. You can't stop. You can't give up, even when it could be so much easier to. There's always going to be a number of bumps in the road and challenges ahead but you decide to power though rather than sit around and complain.

People think it's easy to be sick and unable to work. It really isn't. Many people can make a judgement about my life here but they don't really know. It may be hard to understand that having any illness is difficult. I spend a lot of time organising appointments with specialists, GP appointments, prescription orders (which with nearly 30 different meds can be hard to keep track of stock and quantity, especially some meds that I need varying amounts some days like salbutamol, the single most important medicine to me). I have a routine, taking certain meds at certain times as well as monitoring my conditions to catch any danger signs. My 'job' is survival. It doesn't run 9-5 hours. I don't get any annual leave or bank holidays. I live on PIP payments and ESA, which doesn't always guarantee anything as the state looks to cut state benefits further, for many disabled people like me, it's an uncertain future.

The last decade has been such a turning point in my life. It was around 2010 that I had to accept that I wasn't fit for work and that my asthma was getting more difficult to control and taking a toll on my body. I did feel depressed for a while, but I think that was truly my darkest time because I was just getting more and more attacks and not recovering. I remember doing my DLA (disability living allowance) form and feeling so down afterwards that my support worker at the time took me for a cup of tea before taking me home, but then I remember that summer and getting that award letter. I remember getting back paid and having a wonderful time.

My biggest aim was to not end 2019 stuck in hospital. I'm glad that we have gotten there. I'm incredibly thankful that I've managed to end the decade comfortable in bed and happy, 3 happy guinea pigs in the next room and with someone who makes me feel lucky to surrounded with love. When you have love, what else do you need? I am incredibly lucky that I have some amazing friends (who are more like the dysfunctional family I adopted) and family who are always there to support me when I need them and I can be there for them when they need me too. Not to mention those incredibly chubby and adorable little animals who share our home.

So, there's been a lot going on recently and it's been a bit of a curveball. We solved a mystery of what was causing those horrible abdominal pains I was having. I'm doing the this decade's first course of home IV antibiotics, which of course carries it's own set of challenges and issues. The worst of which was my veins. My veins are stupid. On Monday it took us 3 attempts to get in to one, then the thing shut down the next day... (I had gotten 3 doses in)... and inflated my arm. I have had that a few times and its's not pleasant. So when we tried to get in to another (5 attempts this time) we only just got one in and we ended up with me going up to the Bromsgrove hospital to have something called a Midline inserted.

For the people who have never heard of this, a midline is basically like a bigger IV cannula. It has to go in the upper part of the arm (above the elbow) and the nurse has to use both ultrasound and numbing to get it in. For comparrison, a regular IV cannula is about 2.5cm. This one has a tube that is about 10cm. It also requires a sterile environment to put in. It took 3 tries (because my body was never going to let us have an easy time was it?) and some rather impressive bruises but now it's in, it won't tissue as easily and will last my entire course. I have about 12 days left.

OK so, about the abdominal pain thing, so about 2 years ago, I started having weird pains in my belly, usually worse when I was using the loo or coughing. I put it down to pulled muscles. Well during my admission in October it was really hurting me so they checked it out. We originally thought it was my gallbladder. But it wasn't until Christmas Eve when I was having my wash and Jace happened to notice something looked strange around my belly button (It looked like a small lump emerging from it, very strange) and we got the doctor to have a look at it as soon as we could. Turned out that I have an umbilical hernia, I had one as a baby too but that settled down. What this means for me now is that I will have to have a small operation in which they will poke it back in, close the hole in my stomach muscle and stop it getting bigger and more uncomfortale or even trapping and becoming dangerous.

It's going to be a fun year. We also have plans for something pretty damn amazing but I won't say what just yet. Well a couple of things. So look forward to that!

Happy 2020 everyone!!

Until all are one
Wendy xx

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