Hospital and New Piggies

Last week was a tough one. Basically I gradually started to run out of steam and when that happens and my lungs just do what they do best and constrict, well it's pretty obvious where that ends. It'd been nearly 2 years since my last admission, maybe I was getting overconfident and I likely left it to the point where I couldn't set my symptoms straight. I woke up about half 8 that morning with all the muscles in my legs and back constantly spasming and trying to stretch out. If you use a lot of salbutamol it can cause your potassium levels to drop and the biggest symptom I get when this happens is that all my muscles to haywire, like I can't stretch them out so they hurt. I didn't want to wake Jace up so I went and flopped over the futon, chest was tight so I was on nebs too. I lay there for a while, even putting on some Simpsons to distract me. I really wasn't feeling good. Jace woke up and tried to get me to bed and we tried to get me to eat, by that point, I hadn't even tried to eat since Wednesday lunchtime. Didn't feel like I wanted to. I wasn't drinking either, nor was I "going" to the loo.

Then during another neb I had to get up and was violently sick. Throwing up bile isn't pleasant at the best of times and we knew then we were getting stuck. After the neb we realised we couldn't have done anything now and we pressed my lifeline button. Somewhere along the way, either by coughing or retching, my rib fractured and even breathing was making me cry out (which is something that I almost never do unless it's bad). My temperature was really high (I think we hit 39.5°C at one stage) and my oxygen levels were struggling, even on oxygen. I remember having a paramedic put a drip in to give me paracetamol but then it's kind of a blur of people coming in and out, apparently I was really calm or just didn't really know what was happening. When I got to MAU, the sister told me exactly what was going on. I was starting to develop sepsis which is why the doctors put me on IVs for pretty much everything. All I wanted though was to sleep.

I had a lot of doctors, nurses and ITU people come to see me. The A&E reg didn't think my asthma was the problem (no wheeze but I wasn't moving air either... ) then ended up being told that I was having a serious asthma attack and needed loads of Hydrocortisone, Magnesium, nebs and high flow oxygen. It's no shock that once bedtime came, all my meds were sorted (mix up...ugh...less said the better, when your pain meds aren't prescribed properly is the most frustrating thing), I just plopped. I was happy enough to sleep until about a nurse was worried as my blood pressure dropped. I felt better though, just very tired, being awake at 6:30 after getting to sleep around midnight. The problem with hospitals is that you can't sleep well, unless you're elderly or drugged up to the eyeballs. I think it's the openness of the situation. People are going in and out and you can hear conversations at the nurses station.

I find the whole thing awkward, you're sleeping in a room with people you don't know and are usually 3 times your age so there's little to talk about. I do try and make an effort with everyone because it makes it easier to cope with. I got talking to the relatives of the girl next to me, her story was sad but her mum was lovely and so funny as she told me about her journey. I won't discuss the girls story as its not my place, one thing that we do here at "My Journey" is to not discuss other people's physical or mental issues (or private lives, including personal info) without permission to do so.

One good thing that happened here was some new arrivals. I am on guinea pig groups on Facebook and got talking to a lady from a local guinea pig rescue, Puddleducks Guinea Pig Rescue runs a sanctuary for guinea pigs who need to find their "forever home" and I had been talking to a lady called Gemma about a group of 7 pigs that she had received and this week, we adopted these two little balls of white fluff. Marik is 2 years old, he's quite skittish but when he calms he loves cuddles! Bakura is 6 weeks old and he's insane! I found the little nutter trying to climb the side of the cage, I've never seen a piggie do that! Marik is very protective of him but it's good to see how much happier Yugi has been since.

I guess that's all for now, I'm a bit tired still so I'll probably blog again soon. So until then, please enjoy this picture!

Loves
Wendy xx

How to Be Accepting of Life

The not so fun thing about having a disability and not being able to work is that people are often quick to make assumptions about what thats like. There's a big difference between not working because you can't or because you won't. The truth is that most people I know who are in the same boat as me would love to work and contribute to society. Being on benefits has a stigma all of its own and I've heard enough people complain about people like me having to live on benefits. I've been accused of being too lazy to work (I would love to see someone work when they struggle to do the basics, have to rely on oxygen and over 30 different meds). I've always sat down with people and asked them why they think that. Then I explain that my "job", if you like, is just staying alive. To tell my story and hopefully empower other people to be OK with not being OK. But I also want to help people to see that just because we have a condition, we don't need to be pitied or treated differently.

Don't get me wrong, illness isn't something pink and fluffy. Being in pain all the time isn't cute and when you pity someone or baby them, you make them believe that they're a victim somehow. Or (and this is actually grotesque) there are those who only feel safe or loved when they're getting sympathy so they actively seek it. I've always said to people that I am Wendy, Wendy has many things that make her interesting. However Wendy happens to have long term health problems but those are only a small part of her. It may sound weird but I may have to deal with a lot but there is something more in here. Something that is worth hanging on to.

My day starts with the usual checks, it's important for me to monitor my peak flow, symptoms and other signs as the slightest dip in anything can be the signs that something has started to happen and it's vital that we know before it becomes an issue. Peak flow is the most important thing to monitor for an asthmatic. It's a measurement of how well your lungs are working and sudden drops can be a sign that you need help. My peak flows are currently very low as I have a chest infection and it's a stubborn one. I know that any sudden drop off or shortness of breath is an indication that I could have an asthma attack unless we get on top of it. After checking to see what's what, I then take my first lot of meds.

My meds are hard to manage as the list is ever growing and I am constantly checking what I have, trying not to be too much of a bother by asking for things to be brought in and ordering what I need to (which often has issues with the pharmacy not ordering what I ask for or some other break down in communication) and the subsequent having to chase the doctors or pharmacist to make sure I have what I need. I don't want to be on meds, I just know that without them, there's going to be a lot of pain and the possibility of even dying without them. I don't like that I have to ask for help and I hate that I have to disturb Jace when he does things, it makes me feel like a bad girlfriend sometimes but I know that I can't really do it all myself anymore.

I try though. Every day.

My hobbies are keeping me sane. I love playing TCGs and I really love collecting the cards themselves. Making little animations is another thing I do (usually MMD videos) or drawing and sewing. It's true that I have a lot of hobbies to keep me busy but they're only possible when my body allows them. Recently I have had a bad chest infection that has pretty much limited me as to what I've been able to do. Pain is a real part of what I had to cope with and being breathless can add to that as well. It makes you feel like you're doing 4x the work. Seeing something you'd worked on come to fruition, even when you struggled with it, is such a great feeling. If anything, the struggle makes it more worthwhile. I'm hoping that things will get even more busy when club comes back though, especially now I'm a registered judge.

Being a judge is great! Since joining the roster, it has inspired me to take my game up a notch. I have a deeper understanding of the mechanics of the game and it's really opened my mind to new strategies. It's been an amazing journey and I can't wait for things to start up soon and I can start doing what I enjoy.

So what I want you to take away from this is the courage to live your lives, be happy and don't look at just the things that are wrong, take in the entire picture. Take in every detail, however small because there is always something worth working for.

Loves
Wendy xx

Powerful Positivity

Its been hot here. Too hot. Never was one for the heat so this heatwave has been driving me mad, so I've been laying low with multiple fans and black out curtains, keeping the sun out. I've been drinking like a fish but that's what you need to do in this kind of weather. It isn't an easy thing for anyone to withstand, let alone someone with my kind of limitations and issues. Things like going to the loo can be a challenge and my nebuliser and I have never been far away from each other. Being on nebulisers at home has really made so much of a difference because I can handle my asthma a lot better and spend less time in A&E for nebs. Imagine if I had to go to hospital whenever I needed a neb?! I'd never be at home!!

I'll admit there's been times that I would love to unzip myself out of this body and in to a new one without medical problems. I mean it's natural right? No one wants to feel poorly all the time or have to spend hours trying to manage symptoms to have some kind of semblance of a life. That's the thing though with a lifelong condition (or conditions), you are always playing catch up with yourself, sometimes it pans out OK, other times not so much. I wake up some mornings feeling like someone ran over me with a lorry and sometimes that soreness and exhaustion means that getting out of bed can be difficult and I rely heavily on having something to keep me upright. 

My HSP has been getting worse recently too. Basically Hereidtary Spastic Paraplegia is a condition that causes the nerve endings from my spine to my legs to degenerate. I've had it all my life which is why when I was younger, my walking was a bit odd. Not to mention the curve at the base of my spine and the nerves it entraps, previous injuries to my back, arthritis and osteoporosis which make things like walking difficult. My legs are often weak or even numb so it can be difficult sometimes to get up and move around. That and having a pair of damaged and bad lungs can make life difficult on a bad day, throw in a stomach which doesn't close properly and Crohn's making my intestines grumbly, it can get pretty miserable, but only if I let it, which is something I can't do. What does self pity accomplish anyway? I guess though it's about making those bad days at least meaningful in some way and that meaning comes from the little things.they often say that it's the simple things that make up life afterall and thinking less about what I can't do and more about what I can do.

I can't grumble too much though. I just try and keep myself occupied with things like my crafting, MMD and of course gaming. Since becoming a Level 1 Yu-Gi-Oh! Judge, I've really learned more and more about the game and what rulings mean and as a result I feel that I have grown as a duelist too. I enjoyed Yu-Gi-Oh anyway and Jace and I love playing together. When things start happening again soon it'll be great because we can go and do what we love together again. Obviously we'll be careful about the more expensive mats and cards as they need us to protect them and keep them from accidental damage and nothing shows deep appreciation for something more than taking care of it. I spend hours with my decks, preparing them and making sure that only the nice, clean copies of cards are used. Obviously there's some cards that I would be wary about using in case they got scuffed (mainly my Cyberdark Impact secret rare and LART Monster Reborn) as they also carry personal meaning to them too.

It's funny actually, I've always had this thing about taking care of things, even if they aren't what other people consider valuable. True value is in the intangible. It actually bothers me how some people throw money at things to either try to impress or be better than others. Growing up, we didn't have the latest gadgets r expensive trinkets, if we broke something we didn't automatically get another. We were resourceful, something I still take pride in. I have a Sony camcorder, it wasn't top of the range or overly expensive but my family came together to get it for me for my 20th birthday. When it started having issues I was really upset as I've had it for 10 years, so instead of rushing to get a new one, like most people would, I did my usual thing of trying to repair it (which I did). I did the same with my Vita, PSP, laptops. Actually a lot of things have been taken apart and mended. So when the camera started behaving and working again, I was so happy because whenever I use it, it reminds me of my family and the lessons my parents taught me about not wasting anything, including time. Make the best of things.

So, if you take anything from this, let it be that life is short, make it what you want it to be. Don't look for someone to blame, take responsibility for your own life.

Loves

Wendy xx

Dear any doctor who advocates pain acceptance,

I write this so that even if you don't know my case or me as a patient, you will understand what chronic pain means for a person. It is likely that someone asked for your help today to overcome something that they're struggling with. It is also likely that help was denied because maybe you didn't want to add to what they consider to be the "Opitate Crisis" or you thought they were just looking for something to get high on. Although there are many people who are just after a drug fix, here's the truth. That is only a minority of people who ask for help for pain management.

The thing is, I, like so many others, have a number of health problems that are painful. Have you ever woke up and had to force yourself to move because you slept so badly and everything is hurting? Have you ever tried to stand up, only to have shooting pains from your neck to your hip? How about breathing? Does the expansion of your rib cage feel like it's so painful that you only take shallow breaths? These are just some examples of things someone like me experiences on a day to day basis! Now, my pain isn't the worst pain out there, it's not a contest though, remember that, but it does have a negative impact in my day to day life.

Now imagine you're trying to ask someone for help after the 5th night of not sleeping for more than a short period. You're exhausted. You just want it to stop now and for a reprieve from all this. You aren't asking to be doped up to the eyeballs, you just want the same as everyone else wants and should be entitled to, to live without constant pain and to function somewhat normally, or as normal as things are when you have an illness. That person says "No" to your request, saying something patronising usually about how pain is something you should just ignore or try and live with! Even if it does make you feel like jumping off a bridge in to oncoming traffic. Being told that despite your suffering, you aren't going to have someone help you, no matter how much you cry and you should just accept that. "Drink water and sleep..." "We can't give you pain meds because we don't want you getting addicted..." "Be more positive." And finally "There isn't anything we can do", the most soul destroying phrase you can hear.

I have experience of pain acceptance first hand and it wasn't good. It made me feel like there wasn't any point in trying anymore and if it hadn't been for people who love me, I would have become another statistic. Another life taken because they honestly made me believe that I had no other choice. Its true that pain medication doesn't cure what causes the problem but when you're problems are pretty permanent, it makes it less daunting.

No one wants to be stuck on powerful drugs to function.

No one asks for this.

No one should be denied help.

So, please, try and empathise with the next person who tells you their suffering and need you to help them. Please try and look beyond the media creation of a crisis that isn't really the way it's been portrayed. Yes there are places where the prescription of opiates isn't appropriate but try and look at each case individually. Empathise. Think about how you would feel in their situation.

Please hear my humble words and help people who need it. Advocating pain acceptance is only compounding the problem and isolating those who need their medicines to live without constant pain. The result of this could be that that person decides that the pain is too much and they can't live that way anymore. It does happen that people think that it's better to end their lives than suffer.

Loves
Wendy xx

Reality

First of all, I am pleased to announce that I have been named as one of the top asthma blogs of 2018. Its been 5 years that this honour has been given to me. It really is an honour as well because when I started my blog it was mainly to help me deal with things and I found it was a catharsis. I really was in a terrible place and was emotionally and physically at the end of my tether. I remember it was towards the end of the hell that was Redditch YMCA (never ever again) and I think that without my blog is it possible that I could have just given up. And at that point, I probably wanted to. So I wanted to thank everyone who has come on the journey with me and to everyone who supports me, loves me and still likes to be a part of this thing. It means a lot.

I was often told that people wouldn't want to read my blog, that things were only going to get tougher and that I wouldn't be able to do this. Yet here we are 8 years later and I am now in a better and happier home, one where I can live with Jace and the guinea pigs and feel hope for the future. A future that at more than one stage I was told I wouldn't have ever known. If I had stayed in the situations I was in, I could well and truly believe that. OK so I have moved twice (first from the YMCA to my old Abbeydale place then 5 years later I moved to the bungalow) but those moves were important for my mental health and my physical health. The moves were both tough, the move from Abbeydale to here was probably the hardest as by that time I was in a precarious health state and I was worn down from things that were going on there, things that I don't feel like I should really elaborate on. Its not that I don't want to think about them, I'm just moving on with my life.

Moving to the bungalow has been so much of a turning point though. Its in a quiet corner in a quiet area. We have no trouble here, no drunks or drug addicts. The best thing is not having anyone upstairs to keep me awake all day and night. I can honestly say that I am not suited to living in a flat! Some people just can't hack it. I am one of them it seems. I don't mind this though as I feel as though I landed on my feet here and I think even (the last pet from Stanley Close) Yugi seems much happier, even if he doesn't like clean outs as it involves Jace wearing marigold gloves and he chats his teeth at the gloves. He's a funny pig really. He's been getting more and more social and has even brought Tristan out of his shell a bit so that's a step forward, he even took a dandilion leaf out of my hand the other day.

I think that one of the things that comes to mind though about living in a bungalow, especially now the weather is warmer, is that impact that people's lives when you have a nightmare neighbour. I'm not going to say that I'm perfect by any means and sometimes my garden looks a bit overgrown but I do try and keep noise down especially. I've lived with people making a racket all hours of the day and night and know how miserable that can make a person. When you're putting up with that day in and day out, you stop being able to sleep which makes it hard to function and actually has a massive impact on your immune system. People who are stressed out are more likely to suffer from illnesses. My own immune system is a bit rubbish due to prednisolone and my lungs are particularly weak as the years of stress and generally being unwell have caught up to me. I'm not as young as I was and don't always bounce back.

It's funny to think that 8 years ago was when I finally empowered myself to change things for the better.  I'm going to be honest though, I'm glad I've been making changes to how I was back then. Its proof that you can make positive changes in life, even if it doesn't always feel like it. I'm not saying that it has always been easy but it has been worth it. I'm still a work in progress but I can actually believe that I have a future now (even if some doctors are skeptical about just how long or what kind of future it'll be, others seem more optimistic, I'm more inclined to be positive) and I'll still be moving forward and making each step of the journey count.

Last week, we went to town for the first time in a while. It was great to get out and do things, even if it was exhausting. We went to the cinema, had lunch at Subway (yum!) and had a wander around town and a look through the shops. It's been a while since I've been able to get out and have a good time, probably because of the infections and asthma being a pain. I'll be honest, things are more exhausting these days. I find simple things like taking a shower or microwaving and eating a meal can be tiring, but with only 30% lung function (at best) it's not surprising that I'm working 3 times harder than most other people.

Its a harsh reality. 

But it's my reality.

So let's see what the next year has for us!

Loves
Wendy xx

Keep Going.

I guess that things are going as they normally do. I've been having the usual issues with my asthma, my other conditions kicking me about and generally feeling quite drained and tired. This isn't really too unexpected, especially given how things are at times. I think that by laying low and just getting through the day by taking things easier has been the key. I hate being inactive though. I'm really not the kind of girl who loves to lie around and never move or do anything. Getting me to slow down is often a challenge. It drives me nuts because I feel like I should be doing something more constructive than what I do do some days. It's not because I don't want to, its just that my body doesn't feel like it, simply put. I do try though, even if it is something small like getting up and making myself food or drinks.

In fact, my biggest thing is trying to do too much at times. Whether that's from a natural drive to keep doing stuff or something else, I just can't really stop for long and find it frustrating when I have to take things slower or not do so much. I hate it when people assume that because I can't work or do much physically that I don't want to. There is a difference between can't and won't. "Can't" is not being able to do something because of it causing physical pain or illness. "Can't" is when you look at what you want to do but no matter how hard you try, it just isn't really attainable, but you still try. "Won't" is a choice. "Won't" is a bad attitude to have in life because its a prelude to laziness. There's a level of childishness to "Won't" as well, like a kid saying "Well I don't -want- to do something so I won't, so there!" and too many people have taken that tack and gone with it. The fact is, often people don't reach their potential because it's easier to just sit around and let technology or others do it for them.

I think that maybe if people looked closer at the situation they were in, they could find a way around things. There's too many people out there who are really wasting their natural gifts because they can't be bothered to try. Personally, I like to look around and find things to do. Maybe its a strange habit of mine to keep busy. I enjoy doing simple things, sewing, drawing and writing as well as gaming. I recently started working on MMD, an animation software that is free and fun to use, albeit, it isn't the easiest thing out there but with some work and tweaks you can figure something out. I have the time to do these things so why not put it to use and get creative at the same time. I've also reached out and made a new pen-pal in the USA who is also in to card games and we have even traded cards with each other (because personally I think that is a big part of making TCG decks and cards that have been given to you by friends are more lucky). 

I'm also making headway with my Sleep Apnea. Last year, I had my sleep study and found out about OSA and we found out that although I have moderate OSA, my lungs were just not happy and my oxygen levels were reflecting that. My pressure has been altered a lot, more recently it was reduced as the thing was just being painful and not really helping me, not to mention the fact that I was getting more air in my tummy than anywhere else (trapped wind... ouch!), which was embarrassing at times (what goes in will inevitably come out, I'm naturally quite... gaseous anyway so you can only imagine what poor Jace has had to endure!) as well as very uncomfortable. So, Thursday was the first night on the lower pressure and it was actually much better (and I managed to keep it on my face so that's a plus too). I am hoping that by removing the polyps in my nose and closing my perforated septum will actually go some way to making it so that I may be able to get off CPAP but I am being realistic about that too, it could be that like my oxygen, this is a permanent thing.  

I guess its a case of just keeping on with things, not giving up (even on the days where it would be oh so tempting) and keeping a clear and focused mind on what you want to achieve. 

Loves

Wendy xx

Tests

I'm sorry for not being active again recently, still struggling with a myriad of problems which are likely to be clashing with each other and generally leaving me with little energy and as such, I've been a bit reclusive recently. It's been a tough few weeks and we're still none the wiser as to what is making this be the case. Things are getting harder and I'm finding myself not quite as energetic as maybe I should be. I've had 5 blood tests already this year and the anaemia is getting worse rather than getting better, despite being on both folic acid and ferrous sulphate. It's all a bit puzzling really.

I'm going to be kept busy though with a lot of appointments with specialists, scans and anything else they want to throw me in to. It's a bit daunting. Maybe it's that part of me that doesn't want to know what the cause of this is in case it's something that can't be fixed. I'm all for finding out what's going on, knowing the enemy so to speak, but I am dreading the all too often mumbled line of "there's nothing we can do." Knowing that something is there and it can't be made better is the most frustrating thing and I can't even describe as to why. I think it's because of the preconceived notions that you see the doctor, get a pill or injection or something and then magically you're well again. OK so that hasn't happened in my case as it's a lot more complicated than that but you get then gist of it.

I wish there was some cure for all of this.

I really do.

Not just for my sake but for everyone else who has the same conditions I have, because I wouldn't wish this on my worst enemy (if I had one, don't really have time for hating people, if I don't like them, I simply don't acknowledge their existence, why waste my time and energy?)

I've been keeping my spirits up with the usual fun of gaming, cards and anime. I also recently started learning MMD or MikuMikuDance, a 3D animation software where you can download characters, "motion" data and other things and make your own music videos. It's fun because you can do pretty much anything if you can imagine it. I have a number of YuGiOh characters who have been my test subjects and I even uploaded some of the results to YouTube too. What's fun about MMD is that you can set the stage and just let yourself run wild. My best animation so far has got to be my video for "Calc." (originally a Miku song which was covered using Kaito instead) in which I made 5Ds protagonist Yusei Fudo the star, along with his favourite Stardust Dragon (that dragon was awkward but I got it flying eventually), his trademark red motorcycle and a really awesome looking guitar too. I'll probably even revisit it in time and tweak the animation slightly but I am pleased with how the video turned out. I also have another project ongoing with the Dark Magician Girl but that is staying under my hat for now!

My asthma has been awful as usual but I'm trying to keep things from getting too difficult (albeit that is a little tough). I'm hoping that if we manage to fix a few of these little problems, we may be able to edge out the bigger problems a little. Got to hope that's the case anyway.

Loves
Wendy xx