Starting CPAP

I've started on my CPAP therapy and am finding it a little bit difficult to get my head around it. So far it's been a few days but I'm not really feeling better as yet. I'm trying hard to just be patient and even if it's making me cough, I'm trying to keep that mask on. Like my oxygen. Like my nebs and wheelchair. It's hard not to feel like this new thing is like a life sentence. I hate that I rely on things to keep myself going and in myself, I'm finding it hard to accept it. Maybe it's because I didn't expect to be coming in to my 30s with everything that's happened to me but in a way, I hoped that I wouldn't need so much help.

For anyone who doesn't know what CPAP is, it's short for "Constant Positive Airway Pressure" and it basically pushes air in to your lungs to act like a splint to make them stay open. If you have sleep apnea, basically your muscles in your neck relax and go floppy, causing them to close up and basically makes you stop breathing. Obviously this puts immense pressure on your heart and lungs, which for someone whose lungs are not as good as they should be is particularly dangerous. It pushes up your blood pressure too as well as interferes with sleeping. To have the CPAP on is very unusual. Imagine you're standing in the middle of a gale and the wind just takes your breath. It's like that really, I'm sure that it will get easier but that's the way it is for now.

It does seem a bit bittersweet that I'm reaching an age that doctors thought I wouldn't ever reach. Maybe it's because I see people I went to school with as they have wonderful lives, children and are in their prime, don't get me wrong it is wonderful to share in those wonderful things and see them so happy but it is a reminder that there's a lot I won't get to do. Personally I am OK with not having children (I was told when I was 17 that I wouldn't have one due to problems with my uterus and ovaries) and maybe my pets do fill the gap. I'm not OK with having enough equipment for a hospital ward in my house! But I can't change that, I can't just not have it otherwise I'll just get worse and it could even be deadly in some respects.

Something that did annoy me about all this was that I had been saying for nearly 5 years that my breathing and my sleep were problematic but it wasn't until January when I had a particularly confusing appointment with the oxygen nurse that I finally managed to pursuade her to do a sleep study to prove what I was saying (because she wasn't listening to what we were saying and she kept saying that because everyone does naturally desat at night and she had asthma too so it couldn't be a problem, right?). I think she thought it would prove her point and when it didn't she then changed her tone completely! What worries me is how many other things are being ignored or going unchecked? What would have happened if we hadn't stood our ground and got the test done? Luckily now it's the Respiratory Nurses at the hospital who manage my oxygen for me and they're doing a great job! They were concerned that my sats did drop to as low as 70% (without oxygen) and I was stopping breathing 27 times in an hour (which makes my OSA "moderate"). The one thing they really wanted me to understand was that it isn't being caused by weight (pred made me pile on the pounds), more because of the anatomy around my neck.

The first night of CPAP was weird. I managed to tolerate it for 4 hours and then had to get the thing off, neb (as I'd been wheezing) and at some stage I'd put it back on. I felt like I'd slept for once but I didn't feel the immediate energy boost others had. The second night was awful. Last night was a little better but it was difficult to get settled for a while, not to mention the cough and pain in my sides (pleuritic like pain again, not pleasant). I'm keeping a short diary on things so that on Saturday, I can be as honest as possible. They said there's other things we can try, dental appliances and some surgery, but obviously this is the gold standard of treatment for OSA and as my lungs are struggling due to the whole effects of brittle asthma, it's a very complicated situation, I seem good at baffling medical professionals. I've been confusing the staff at the Alex for nearly 10 years now!

I'll keep trying to get as much sorted as possible, but it's not a simple "take this, feel 100% cured" kind of thing. I think that deep down I always knew that, even if my instincts tell me to fight tooth and nail against it. What more can you do? OK so it was hard to get this taken seriously, I had to fight but in a way it's good that I did. Something wasn't right and it couldn't stay as it was.

Loves

Wendy xx

Cards, Games, Guinea Pigs.

First off, I'm sorry I haven't been updating much recently. I guess there just hasn't been too much going on and I didn't think that my readers would like to read "Well, I got up, did meds...did a few other things then slept for ages..." over and over again.  My asthma has been really bugging me though recently and its not been so simple to settle it. I don't post whenever it's bad because I don't like when things get repetitive. I have been keeping busy with some cross stitch and some other little bits and pieces. I'm currently sorting out a load of cards and other things, in fact I have boxes of both Yu-Gi-Oh and FFTCG cards to sift through and sort in to binders but it is kind of a job for a day when I have more energy. I am gradually working in that but as I say, it'll probably take me a while as there is so much that needs sorting (including boxes of cards from Opus 1,2 and 3 as well as my spare Yu-Gi-Oh cards and again, there is a lot!). I eventually want to sort the binders so that I can have playsets of certain cards together and even get some of the spare stuff on to eBay so that they can be used by someone other than sat in boxes gathering dust. 

I am also planning to show off some of the decks soon too so watch this space!

I find it irksome when I look at cards on eBay and seeing the states some people's cards end up in and the amount that some more sought after cards can be sold for even though they look as though they were fed to the dog somewhere along the way. I also hate when people put up a stock photo and the actual card they supply is not the "mint" "first edition" you so badly wanted, or (as happened to us recently) the card they give you isn't even real, and not even convincing as a fake! The thing is, it isn't exactly hard to keep your cards in good condition. If anything it costs less to look after the cards you have than to keep replacing ones that have gone tatty (especially when you have a 40-50 card deck and some of them are quite expesnsive rarities, some cards can actually be worth more than £100, just to put in to perspective). When I get cards myself, I always use sleeves (and colour coding) so that they stay neat and clean, as well as boxes so that decks and things can be gotten to whenever I want them. I also brought myself a couple of new mats to accompany my new Aster Phoenix (Destiny Heroes) deck and Zane Truesdale decks (Cyber Art and the Underworld Cyber Deck). These were particularly interesting as they are both rare and hard to get hold of in themselves. The Zane one has a rather fun story in that we had found one after searching and the seller was being a pain, then as if by fate or something, this other one in better condition came up just in time for PIP, we had to snap it up and we got a bargain with it. Well both of them actually, Aster still goes for around £30-£60 but then you have the import charges and Zane is even harder to get hold of!

Jace and I love our character decks. And we like to make them as good as they can be. Things like the print, edition and rarity are important here. There is something
nice about when you get a first edition of an older card and its in the best rarity and the condition is immaculate. It makes the deck look and feel so much better and shows that you really care about the game. I recently got my hands on a first edition "secret rare" (they're just so sparkly!) print of the card "Power Bond" and the condition was pack fresh, probably never even used before. We were really impressed by it because of how beautiful the card actually looks. The decks are coming along and we really do enjoy our evening duels. Sometimes it can get down to the wire and sometimes it ends in a really funny way (or like one occasion where it ended, exactly as it had ended in one of the anime duels with us both using a card called "Final Fusion" where you both take damage equal to both your monsters at once. It's a last resort kind of card really, but in the anime, a duel ends in that exact way and we even had the same monster cards on the field!).

We adopted 2 more guinea pigs as well recently. I have always been a guinea pig lover and I think that they are cute, funny little balls of sass and charisma. Our new friends are the same sort of age as Red (or maybe just a little younger) and they are both settling in well. Joey, our ginger pig, is going to be the dominant member of the group I think. Even if Yugi is older, he is too much of a baby to be the alpha pig and Red is probably going to have a little struggle with Joey to start with. Who knows, they may just settle down in to a routine and be happy. Tristan and Yugi tend to curl up together or sit there munching while the other two bound about and try and assert themselves. It's normal dominance play in guinea pigs so I don't feel too concerned to be honest. As long as there is no lunging or attacking then I am satisfied that they will be a good herd. Pictured here is the lovely, and rather docile, Tristan, he has a cataract on one of his eyes but it doesn't stop him from being adorable and sweet.

I am amazed though at how good Jace is with them. He hasn't ever owned them in the past so he has had to learn a bit about these little creatures and he has stepped up with enthusiasm and he too loves how funny they are and how unique each pig is. Our new additions have made friends quickly with our existing pair and now we get greeted by a chorus of guinea pigs singing for us to come and see them. They are such funny little critters really but we love them. Even if they sometimes get a bit mischievous and they can sometimes be a handful, they are very interesting animals and I do think that they are quite intelligent sometimes, (I have had some rather dense ones though!) and I would love to attempt to teach some tricks to them. I think that out of the 4, Tristan and Yugi seem the most receptive to us, but with the right treat any guinea pig come to you. This here, is a picture of Joey, the little pumpkin pig, hes the more boisterous member of the herd.

We also got our hands on the new versions of the classic Crash Bandicoot games. I LOVED these when I was kid, Crash Bandicoot 1 was the first game I had on the Playstation way back in 1996 and the second one was my favourite. I still have my original copy of Warped as well. I never realised how hard those games were! But it was nice to get such a blast from the past and it made me feel warm and nostalgic. Of course, I am looking forward to the FF7 remake and the Oddworld game Soulstorm, hopefully it will live up to New 'n' Tasty which basically blew my mind because it was so good! I hope they make more of the games we grew up with as kids as they were simple and focused on just having a good time.

Here's hoping.

Loves
Wendy xx

Good Days/Bad Days

The last few days almost caught me off my guard. I don't know what it is but for some reason, my asthma has made things so much more difficult and I am really struggling. I think that the heat hasn't helped me at all. But then again when does it ever really help me? Last night was a tough one because I had several "episodes" in the night and poor Jace, who really is wonderful in how he takes it in his stride and doesn't hold it against me in the slightest, had to keep making sure that I was able to breathe and my pain was managed. Even on the days where I actually have trouble understanding it myself.

The problem with chronic pain is that it can be difficult to explain to someone what the difference in an acute pain and a chronic pain is. To me, a chronic pain is like a constant ache, a constant feeling that someone has tightly laced a corset around my entire body. Sometimes even a slight movement in bed can leave me cringing with my back or I go to get something and my elbow dislocates and sends a shooting pain through all my nerves in my arm (old injury that is giving me bother 5+ years after I had the fall). Not to mention the pain left over from my lungs and other problems, I have to take strong medication in order to be comfortable but the price for comfort is being ridiculously sleepy afterwards.  I then have the issue with my back which makes my legs weak and my nerves feel like they're being hit constantly from my neck, down to my bottom. You see, along with my small curve and previous fractures to my spine (the worst of which was when I was 10 and was messing around with my brother, imitating wrestling moves, long story short, my back was damaged when I hit the wood on the bedframe. Made worse by my Dad picking me up and making me walk, I spent 6 months trying to walk properly again and when my Mum asked the doctor, we were told that it would only be known as I grew what lasting damage was done but I should have gone to hospital and would have probably needed treatment for it), I have my Spastic Paraplegia to deal with.

HSP (Hereditary Spastic Paraplegia) is something I have had issues with for as long as I can remember. It meant that as a child. I couldn't run around or do things like other kids did. I wasn't very athletic and struggled with things at times, I couldn't even straighten out my legs properly, and I still can't. When I was about 12, we saw a specialist who gave my Mum these exercises where I would lie on my back and she would have to manually lift my legs and hold them there, the pain was often unbearable and I would almost scream the house down. My Nan on my Dad's side of the family had the same problems I have in her legs too, along with eczema and a squint which I inherited as well. It did improve for a while in my late teens when I used to ride bikes everywhere, but nowadays its just an issue that I will have to live with. HSP has no cure and it is degenerative (most people don't experience the worst symptoms until they reach adulthood and the nerves that supply the lower part of the body start to have problems). It does mean that I am reliant on my wheelchair to have any kind of independence.

My wheelchair is the thing that allows me to do whatever I need to do. I would prefer to not have needed one but I think that I did OK. They told my Mum that me ending up in a wheelchair was inevitable but I managed to keep myself out of there until about 4 years ago when I started realising that I was really struggling to move around. My lungs were struggling to cope as well. Since getting my oxygen, I do manage to do things but it does take more out of me. When you only have 30-40% lung function at best, it does feel like you're working extra hard to do the same things that other people do so easily. It sucks, but the thing I am always reminded of is that somehow, I am still here, even if there are days where I feel like giving up. I had a bad day recently, I don't want to get in to it as it was horrible, but I managed to talk it out rather than doing something I would have regretted.

I have those days sometimes where I am questioning myself as to why I keep at this even when it looks pretty bleak and depressing. Those are the days where I am sat there looking at things and I get the dark thoughts, thoughts that I find hard to get away from because they hurt so much. Sometimes I feel like they follow my every move, like some kind of ghost, ready to strike with a nasty comment or thought that will plague me for a while and its awful. I hate this but I have to take medication to slow my thoughts down and calm the manic part of me that wants to run riot. The manic side of me can make me feel like I could take over the world with little more than a pair of pants and a stick and ten minutes later, I feel like the whole world has fallen apart and I can't find a reason not to cry about stuff, but that is the nature of bi-polar disorder and its something that I think people have a hard time in understanding about me. It isn't something I have a lot of control over on my bad days.

I'm fighting and I think that will be something that I will always have to do. Does it scare me? Yes it does sometimes, but I don't have to go it alone because there are always people around to pick me back up again, help me dust myself down and then I can get going. After all, none of the things I have to deal with are more than just setbacks and it really is up to me to not let those temporary setbacks have long term effects.

Loves
Wendy xx

Free Time?

I recently saw a post on Facebook about people who don't work due to illness and the way other people see them and it hit me hard. I have heard every single cliche and line you could imagine about the fact that I can't work and people's often shortsighted perceptions. They think that they're being helpful by saying things like "[insert name] has [insert condition] and THEY have a job... its no excuse to not have a job" etc. But the biggest secret is this, I don't just "get" to sit around all day every day and do nothing. My job is surviving, so I guess you could say that I am a professional patient!

Living with an illness means that you are constantly battling against your own body to stay alive. On my good days, I can still get things done but I am still exhausted afterwards. My bad days, which seem more common recently, are often spent by me trying to do things, getting exhausted and then getting frustrated when I can't do something so simple. My day is regimented by a routine of medications which have to be taken at certain times, not to mention reordered, queried, chased up multiple times and then eventually at the end of a week getting them sorted (this in itself is extremely annoying when you have 30+ meds to keep on track of). This is a weekly thing and it is annoying. It is tiresome and the routine of it makes it daunting to start the process every week but there are things in life you just have to get on and do otherwise they won't get done and if you don't get it done, you WILL suffer.

I do try and give myself other things to keep me occupied though during my treatments. I like to draw and do craft. Obviously I can't do that all the time, its actually quite a demand on on the body when it doesn't feel up to much. Sometimes I am happy to read, watch TV or even play games but again these things are only really what I do on better days. Heck, I've still got 2 boxes of Opus cards that I need to sort through, binders to update (Yu-Gi-Oh and FFTCG). I keep telling myself that I will get it done, I think I am just waiting for a day when I have the energy to do it. Or a day when my pain is a lot less restricting.

Jace and I have been playing more duels between each other and we've been working on our newest decks. My deck is probably one of the strongest I have used, based off Zane's "Underworld" deck (complete with Cyberdark Dragon and its 3 components) and I have been really working round my ideas and strategy there. It's been a lot of fun and it has been a good mental work out. I've really taken to it lately, but then again, I have always enjoyed a good game. Even more so when that game is a good test of the mind. I like keeping an active mind, I always have.

I'm back on antibiotics again (usual Levo/Co-Amoxiclav combo) for 3 weeks this time to see if a little extra time can kick this infection back a bit. Its gotten to the point where I am spending my mornings trying to get as much purulent muck out as possible and its even had moments where it's been bloodied, after pained nights and poor sleep as it even hurts to just rest down. Not pleasant, but respiratory infections rarely are and I have had to nap just to keep myself going. The problem is that when these things get ingrained. They get ingrained and they take a lot of effort and work to get rid of again I'm having to be patient with myself and take my time in doing things. No running myself ragged or doing things when I don't really feel up to it.

I guess that for now, I need to just let my body fight this thing and get stronger.

Loves
Wendy xx

Mental Health

One thing I don't really like to talk about is my mental health. I was taught to believe that my mental health was either not there (because I never knew what depression REALLY was... do not even...) or, after slashing myself open, something that I had to be ashamed of and try to hide from others (because who would accept such a "mess"). It was used as a way to control me through shame and I spent many years trying hard to understand and overcome it. Sometimes it's been easy. Sometimes I have been left curled up in a ball sobbing because I can't make the pieces of my mind fit. Sometimes I wanted to die. Sometimes I just wanted to find a way to survive. Sometimes, I didn't care where I was mentally, I just wanted the nagging voices and horrible thoughts to just stop.

I have Bi-Polar Disorder. 
I have Obsessive Compulsive Disorder.
I have Borderline Personality Disorder and Schitzophrenia.
I have borderline Aspergers.
I have attempted suicide more times than I can say. 
I do struggle with my urges to harm myself. 
My body covered with scars.
 
But...

I have accomplished a lot of things. 
I have always managed to regain control of myself before it's too late. 
I have wonderful friends and family as well as my fur-babies. 
I have a boyfriend who loves me despite the things I have wrong. 
I have my own little place.

I have always been me. I will always be Wendy. 

With all the things around suicide (particularly the death of Chester Bennington, still can't believe that) and people actually embracing the fact that they have fought that mental battle. The way it can make you fight to just find a reason to keep moving. There are times when you want to just do it, despite the fact that it would only cause your family to suffer. People say that those who do take their lives are "selfish" but try and see it from their side of the fence. When you get to the point where all you want to do is close your eyes and just not -be- anymore it's hard to get past that. It's almost impossible to get that out of that place. It can be extremely overwhelming and it can be terrifying.

Reaching out when you feel that way is hard and because of other people's attitudes it can be embarrassing. The worst thing is when you are at the point of falling apart and you have to try and tell someone for them to either not care, not understand or just offer an old cliche response. People have asked me "why do you feel this way?" and I  just looked at them. The weird thing is that sometimes I will explain it, sometimes though, I just can't. I can't explain why I feel hopeless and like giving up when I can't even understand it fully myself. I find it even worse when I feel like I have to justify myself and how I feel and it can be so insulting when someone almost expects me to explain myself. I feel like saying things like "can I not just feel the way I feel?" or "Why should I explain my reasons? Why can't it just -be- what it is?"

I remember my first real "breakdown". I was about 14 and I had had 3 years of verbal, physical and even sexual abuse in school (including one of the bullies trying to get me to pleasure him sexually in the bus parking area otherwise I was going to get beaten up) and the teachers of the school weren't doing anything other than trying to blame me for everything. I'd started getting in to trouble just so that someone would even notice I was stressed, leading to being branded a "problem child", I remember I was getting ready for school, I was dressed, ready to go until I was about to go. I just calmly sat on the stairs. At first my Mum responded, like most would, with firmly trying to tell me to go and get my bus, then, understandably she got angry, then when I finally told her why I was not going anywhere from where I was, she phoned the school authority and thats when it all came out. I did go back for a couple of weeks afterwards, I was told to write everything done to me down but when even the teachers seemed to have it in for me, I couldn't do it. Imagine the shock my Mum had when she came home to find me sat behind the sofa with a kitchen knife. 3 weeks later I was taken out of school. I never ever went back to that place. They did try and get us in trouble but the Education Authority were amazing, they backed us and got me accepted in to another school which was nearer to my home.

The fact is, mental health is real. It isn't a joke and it isn't a shameful thing. It can damage every aspect of your life and because people can't always see it, or you don't fit the picture, it is often treated as though it isn't there or genuine. If someone does try and say "OK so my mental health is being an issue", please don't shun them. Please help them. Please tell them that they aren't alone. Please make them feel loved, and if you're the one whose suffering, please don't give up. Please reach out.

If I hadn't when I did, I don't know where I would be now.

Loves
Wendy xx  

Fighting.

Personally I don't care for the heat, it just makes me feel like I am trying to breathe through a straw most of the time. OK so that isn't exactly to dissimilar to my usual state of being but its still rather unpleasant to experience. Then again having asthma is never a fun thing to carry about with you, along with other things, it can be right annoyance. Sorry I haven't been blogging, if I'm honest there hasn't really been too much going on to blog about (I don't think you would want to read "oh I slept all day yesterday" every day for a week). Its been a bit tough these last few days as I have come down with...something... and we don't know what it is. All I know is that there has been a lot of gunk, fever and generally not wanting to do much/anything. I slept all of yesterday, only really waking up for small periods and then curling back up again. That can be a warning sign in itself. I've been in more pain and even just moving at the moment is enough to provoke my lungs to have a strop. Its been rather frustrating to be frank but this is kind of what you get when your lungs aren't working properly and your body seems to want to join in the fun. 

Today its just been a bit of a struggle to keep myself at a relatively safe level and not have to neb every so often, usually though, when I am having to do it more than hourly, we know I am running in to real danger. At the moment though, we seem to be averaging out to 2 hours. Usually a neb should last me for 4 hours but unfortunately, no one seems to have told my asthma that. Its pretty frustrating sometimes because I feel so restricted on what my body will allow me to do yet there are so many things out there that I am itching to work on or get done. I get really angry with myself sometimes because there used to be times when I could do this stuff and more and not break a sweat. I have to remind myself that I didn't ask for this. It didn't happen to me because I did something wrong. It just is. 

Jace and I have been watching more Yu-Gi-Oh recently (we finished the original series, all 5 seasons, as well as GX and have watched the first season of 5Ds) and have been inspired to build new character decks and cosplays. We won't reveal too much just yet but when the time comes, but lets say this, it will be pretty cool! I have been busy experimenting again with Cyber Dragons (I love those things!) and currently have some new strategies and combos that I can't wait to try out and play with.Of course, building the deck has been the easy part, learning to use it at it's best is the challenge and probably the most fun part. With the Cyber Dragons, its all about getting the groundwork put in, then it's pretty easy from there. Once you have the right cards in place of course then things just kind of, well, happen.

I suppose that I look to things like games, sewing and other things to help me to work through the troubling side of life. It's just my way of coping really and it has worked so far. I try and think that every day that I manage to finish without incident is a day where I have won the battle. 

Loves
Wendy xx

For Chester

Today, one of my favourite singers from probably my all time most beloved band died. If you knew me growing up (well, in my teenage years) you would have remembered my deep adoration for Linkin Park. Their music helped to shape me from what I was back then to who I am now, even being a catalyst to me ending up here in Redditch after leaving my hometown (twice). The story about that lies in my membership to LPU and meeting my first boyfriend Mike, although that never worked out how we thought it would, for 2 kids, we did OK. I celebrated the start my adulthood with them (seeing Linkin Park live with my Mum, one of my most cherished memories) Chester Bennington was a huge part of how I, and millions of others who were in the same boat, managed to get there and his influence and legacy will live on through the hearts and minds of those who will remember him.

And the best way we can show that is through solidarity in mental health and by choosing to live on. Choosing to never give up. Listening to Meteora now, it's like the lyrics hit a deeper meaning to your subconscious. Maybe the saddest thing is that the depth of someone's depression, not just the sadness but the anger, frustration, loneliness (when you're in a crowd, it's still possible to feel totally alone) and isolation. Maybe it's true when they say that an artist's message is deeper when they're no longer around.

Chester was a deeply tormented man. He had overcome more things before his 20's than most people overcome in their entire lifetime. When I first found Linkin Park, I was only about 13. I didn't really like the screaming at first but over time, I came to love it and would find it comforting and moving. Like someone was saying "it's OK, you'll make it out of here and when you do, you'll be a stronger person for it."

There's something inside me that pulls beneath the surface...

I didn't really understand back then what that was. Depression is like that, it kind of swells under your skin, deep in your heart and mind. It writhes and grows. We try and hide it but eventually the cracks start to show and the pieces fall away until you see yourself looking at your own reflection and you have to face that is where you are. It's sobering. It's frightening. And it's hard to take it, stand up once again and realise that you aren't going through it alone.

It's crushing to hear that Chester is gone but I'm not sad, I'm just thankful that for nearly 20 years, the music he and the others made served as guidance, support and a reminder that no matter what, there was nothing you couldn't achieve as long as you turned your strength to it.

Thank you Chester. I hope that now you are able to find the peace you were fighting most of your life for.

Loves
Wendy xx