On Accepting the Need for Help

I think the hardest part of going from not being disabled to having a disability is adapting to it. Having to explain to your friends that you just can't do things like you used to is difficult, especially if they don't understand or see the extent of your illness. Asthma is often seen as just an inhaler and you're good but honestly for 2.4 million of us it isn't so simple. To people whose asthma is severe or brittle, it can be hard to just do simple things. On my bad days, even getting up and in to my chair and going to sit and watch TV can be tiring. Obviously I don't think that I have it especially bad, but I think that a lot of it is down to my own stubborn nature that I refuse to give up and let myself get less and less mobile.

Obviously with the plethora of health issues I have, the only way I can guage it is by simply doing things. I don't like lying around all day in bed, I hate being inactive. Yes it is probably easier to let myself get bedbound but if that's what I'm going to let my life be, I may as well stop my treatments and just let my body give in. But I won't because I've come too far to throw it all away now. Besides I'm not a weak individual or someone who gives up as soon as it gets a little bit difficult, I've survived some of the toughest things but the fact that I'm still working towards making my life better is a testament to my personal strength.

The annoying thing is that no matter what now, I will always have my asthma and it will carry on making things frustrating and difficult. Brittle asthma is a really difficult thing to get used to. Imagine that you're stuck under something really heavy and no matter how hard you try, you can't force that air in to your lungs. I'm like that pretty much all the time and I rely on my nebuliser, my oxygen and now my CPAP to keep my lungs in check. My meds and treatments are vital as without them I wouldn't be able to do anything so I make double sure that things are taken and that I slow down. 

I got my actual machine on Thursday from the hospital. I was a little skeptical about how much different to the initial machine it would be, I was finding it exhausting to breathe out against the pressure of my machine (because of the long term damage to my lungs from infections and chronic asthma attacks) which had to be quite high to take my AHI (basically the measure of apnea events per hour, most people have 0-5 events, severe sleep apnea can be anything over to 30 but there are some cases of 100+) from 27 to less than 1 per hour per night. It means that my sleep hasn't been affected by me waking up to start breathing again and that's had a really positive effect on my moods and motivation as well as my blood pressure! It's not an easy therapy to get used to and it does sometimes annoy me but it is what it is. 

The nurse told me that people need to get checked more than they are. 80% of sleep apnea sufferers don't know they even have it, so if you (or a person you know) snores loudly (along with excessive sleepiness during the day, heightened anxiety, fatigue, existing breathing problems like asthma or COPD) get them to get it checked. Otherwise they're risking a whole host of medical complications and they could even die. There's no shame in asking them for help and who knows, maybe there's a way of managing it and improving your quality of life. I've been so much more myself these last few days than I have in months so it goes to show really. 

The thing with sleep apnea is that theres a certain stereotype of sufferers. One thing I have found in going to the sleep clinic is that suffers aren't all severely obese (I'm not skinny but I'm not exactly massive, I have a little extra padding!) and the people have been so kind and so supportive. Even the other patients are really nice and you do get a sense of who they are and their own stories. Since my disabilities, I've met and spoken to all kinds of people and I love to listen and have befriended other patients, because why be a hermit? Why not just take the time to sit next to a scared old lady and read something to them (one lady enjoyed me reading to a patient so much that when the patient was moved to a nursing home, she asked if I could read the rest of the book for her! Then again, who doesn't enjoy some classic literature?).

I do love to read, it's something I've always liked doing in my spare time. I don't usually mind if it's a book, magazine or newspaper, heck I scour the web often for something interesting. Jace and I enjoy our manga books (and we have a lot) or graphic novels (again we have loads, currently collecting the original Transformers comics through a partwork series, £20 a month gives me 2 hardback editions crammed full of colour and stories of those lovely giant robots). I recently read 4 volumes of the original Spawn comics, read some in the past, watched the cartoons and movie and even based a college piece on adapting the "Spawn the Undead" series. Jace has a massive interest in Marvel comics and he shares that with his dad and which is nice and some of the things Jace has shown me are incredible! Our little geeky retreat from the world is paradise to me!

I think that in life we should enjoy small pleasures and make them feel like big pleasures when we delve in. Just because you have a disability, doesn't mean you should quit. I know that now and now I am about to embrace a new chapter in my life, I can't wait to see where it takes us and to of course keep you all updated.

Loves
Wendy xx

On Reflections

I've been thinking about things recently. I think that around about my birthdays I tend to reflect upon everything that I've achieved in the year and the dreams that I'm either closer to or new things to look towards. I think that my 20s was dominated by being stuck pinned down, every time I would do something, I'd be left with this sadness because I'd be so drained for days after and I would wonder whether or not I'd ever be able to do it again. Would I be able to travel to see Jace again (this was before Jace moved in)? I think that being told that there was no cure or that this was as good as it got enough times and by enough doctors just got to me. I have been grieving for the woman I was 9 years ago. Maybe it's because then I had reached a turning point in myself. Yes I would make mistakes as we all undoubtedly do but I think the biggest lesson learned in all of this isn't about how not to make mistakes, that would be impossible, but how to rise above it all and I think that somehow I got the hang of that. 

I think that the important thing that has come of recent events is a new sense of self awareness and self worth that has come from finally getting things back on some kind of track. OK so it wasn't what we originally planned for and there are still plenty of things we need to get on track with or adapt to but that's happening gradually. I think that in learning to adapt to life with a CPAP will be undoubtedly challenging but once I get used to it, it will be as natural as using my nebuliser or my oxygen. I do just have to be patient and keep a positive mindset.

One thing that my machine tells me is how well my apnea is being managed on a nightly basis. I wasn't convinced at first I have to say and I was a little skeptical about it but when I looked on my progress today I was pleasantly surprised. I managed 9 hours, my mask fit perfectly AND my AHI (the measure of how many times you stop breathing every hour) was down from 27 times to just 1 time. That is an improvement and maybe once I have kicked this infection down a bit (another 2 weeks of co-amoxiclav/levo to go), maybe I will start to feel the benefit. It can be a bit annoying sometimes and having to wrestle with a mask that is strapped heavily to your face every night does wear a little thin sometimes. Although one major change has been that my depressive moods have reduced a bit and I don't feel as anxious or on edge about things.

I do wish that my asthma was as easy to control though, I seem to be relying heavily on my medications to keep my lungs from trying their hardest to close and make me feel short of breath or wheezy. I know that is kind of what the life of a brittle asthmatic is like, I was under no impression of it being any different to be honest, but the winter is usually a very tough season for me. I know that I can get through all this and keep myself going, heck I've managed it for nearly 30 years now and I will carry on getting through the little bits and pieces that pop up from time to time. Life may not be a bed of roses sometimes but its worth remembering that it isn't a pile of poop either. It's all about celebrating the little things that make it better, appreciating those little things remembering that things may not be perfect but they're not too bad either.

So, lets see what my 30s have in store for me!

Loves
Wendy xx

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

First of the Month

One thing I often have to explain is what "brittle asthma" is and what it means to me. People with asthma tend to have flare ups of symptoms and generally feel OK in between that and that is how it is usually perceived, "it's ONLY asthma...". The truth is that for 2.6 million of us in the UK, we experience what people get during flare ups but its more of a daily way of life. You become reliant on steroids, despite the vicious side effects like weight gain and mood issues (OK so it isn't exactly helpful when you have bi-polar disorder on top of that) and not being able to sleep properly. You become reliant on nebuliser medications, which at times can be a complete inconvenience, or an annoyance if such meds are needed in public, especially when there are small children around who can't help but ask questions, although some of the questions are hard to understand for most adults so I don't even know how an 8 year old would understand. There are things that even I don't understand and I live with it!

Sometimes you even need oxygen at home to help you cope with day to day life which can add an extra level of complexity, going out you have to check that you have enough oxygen in your cylinder for the time you will be out for, tubing (don't even get me started) and making sure that everything is set up properly. Asthma to me has been a difficult thing to work out but somehow I've managed it and through conscious effort and thought, I've not allowed myself to be a victim of circumstances, instead I have chosen to thrive, although there are still things that do throw me for a loop but that is OK too. At the end of the month, I am starting with CPAP to help with my night symptoms and desaturation, I feel a bit uneasy about it still, I mean it is still a huge thing to get my head around and its not surprising that I am a bit worried about how this is going to work.

My asthma is complicated, as are many of my conditions. It is hard to explain to someone who has never been there that it means that often, I find simple things like getting up to move from my bed to my chair or going to the toilet exhausting. I still try however and I still fight because I can't give up because of this.  I choose not to see this as something I "suffer" with, instead I choose to simply "live" with it. I know you're probably wondering what the difference between the two is. Simply put, it's all down to how you personally see things. By saying that you suffer from something automatically makes it a huge negative and something that does nothing but make you miserable. Whereas by living with something is more positive as you're actively choosing to live your life in spite of the condition and the limitations it tries to impose. Because let's be honest, people are too focused on the negative aspects of life that they forget that beyond the things they don't like there are so many wonderful things out there and they get totally​ overlooked.

I'm not saying that we shouldn't acknowledge the bad stuff, that would be foolhardy and would make the lessons they taught us rather moot. We all have good and bad days. After all, it's the good and bad experiences that shape us as people but I personally think that many people focus too much on the bad stuff and forget that there are some wonderful things out there and it's a shame really. I do get annoyed when people moan about something that is completely trivial but maybe to them, that trivial thing is a personal disaster? I don't know. I think that some things are best kept out of the public domain, personal stuff should be personal because you don't know who could be looking at what you put online or whether or not you're being unintentionally offensive. I am just glad that someone who was posting my personal info online now no longer has access to that information and I am making sure that they NEVER EVER will (and anyone who knows these things is sworn to secrecy as well). 

Of course I know there are people out there who are genuinely struggling and have a lot of things that I couldn't ever comprehend, yet their posts are often the most uplifting. For me, I love it when people use their energy to making art or doing something to make the world a better, brighter place. One of my friends crochets to help her, another friend likes making cards and me, well I love my sewing. My sewing is something that gives me tangible, tactile proof that I am still doing things and I am still trying to put my stamp on things. I work on many different things at a time because when it comes to long term projects, it can get a bit tedious working the same design day after day and sometimes its nice to give your mind a break from it, as I said previously, it is important to give yourself some "you" time.

I sew, draw and write to give myself a break from the world around me. I do it to channel my negative energy in to something positive and something to be proud of. My favourite work by far has to be the Sephiroth cross stitch and I am so proud whenever people ask me about it. I worked for 3 months on that, often from the moment I woke until the moment I went to bed. It comprised of over 13,000 hand sewn crosses in over 70 shade variants and colours, thread mixes and types. I did kind of pull out all my tricks and fancy threads for that and it was worth it, every stitch. When I framed it, I couldn't stop looking at it and thinking about how much work went in to that. I have a few bits planned for the next few months but I don't want to spoil them, but I am working still on my season trees and theres a few other things that caught my eye and are definitely going to go a way to brightening up the place, along with a few other things we're planning on to make the bungalow OUR home.

So, here's to a month of good stuff!

Loves
Wendy xx

Spring? Hope.

Looks like spring has sprung and the weather here is sunny and bright. I'm so glad that last month's PIP was used to get a new tower fan as my old one from the flat gave up the ghost but it's not surprising as most stuff there was afflicted by the dampness that lingered in the air. Probably due to the retrofitted back door and the damp course removed. Also buying a dehumidifier device has helped us as well. It's funny, when it was delivered, I looked at the small machine and thought "this is probably too small to do much." but I stand corrected. It's only a little device but the effect has been extraordinary!  The next month will be about other smaller improvements. There's a few maintenance issues that need sorting out but that's all in hand and being sorted out. That's the best way around things is to nip them in the bud before they become huge issues.

This is just one of the few things I'm trying to change about my environment to help make it so that my home is a haven from the world outside and that the summer won't be so grueling on either of us really. I have never been able to cope with heat. Even before my asthma became such a major impact on my day to day life but the trick is to find a better way around it rather than complaining and eventually just annoying everyone. Maybe it's just part of my nature to change things if they aren't what I personally want rather than wallow in the less than nice parts. After all, who wants to read a blog that is nonstop moaning and griping? Make the best of it, of you do that like something, change it. Live the life you want to live, it's not about money​ or things, it's about good times. The best days are the days spent just being happy and enjoying being around the people I love. I long since for out of the habit of letting people demand what I do or making me feel inferior for whatever​ reasons.

I've been occupying myself with a lot of sewing recently. I find it really relaxes me and helps me to just chill. That and watching TV shows on YouTube. One show I miss was "How Clean is Your House?" as it was full of great little snippits of advice and tips that I actually use, like using water and lemon juice to steam clean a microwave, or making an air freshener with bicarb and lavender oil. I do prefer natural things over strong chemical cleaners as the natural is less likely to do my lungs in. Plus it's better for the animals as well. Having animals has been a rewarding thing and it is something that I will always continue to enjoy, although I can't have a dog which would have been a dream for me as my asthma wouldn't take it.

The animals are loving things here and it's nice to see when Yugi decides to pop all over the cage in that cute way they do. Watching Red nestle in his hay, he's really settled himself in. He's still skittish but I think he always will be, maybe in time, Yugi will teach him to trust humans better. Yugi used to be the skittish one but now he's the first to come and say hello. He's even friendlier when you bring him something to eat, whenever he gets given something he takes it with an appreciative purr. He's a well mannered guinea pig. Red is learning slowly but needs me to be patient and loving. Not unlike Kadaj, my first ever rescue pig who was subjected to evil people trying to feed him to a snake, after a year or so, he became as tame as a lamb and loved being cuddled. He recovered from his trauma and lived a life full of love and lots of food!

I think that having pets has been more helpful to me than anything. It helps a great deal knowing that no matter how badly I think I have messed up, Jace, my family and my animals will always be there to help and support me when I feel at my worst. And I know that I am lucky for that. Very lucky, because there's a lot of people who don't have that kind of support network despite going through their own hell. Some people would look at it and think about how hard their lives are but me, I like to look on the bright side and think that although things are rough sometimes (and trust me, these last few days have been a test of just how much my lungs can push) I have been through it. I will go through it again and I will survive and keep on fighting. I want to keep going. I want to hold on to hope that one day they may find a way of fixing this for me because without hope, what is there? 

I have it tattooed on my ankle too, a reminder that hope is there, no matter how you look at it. That tattoo is one of the ones that I feel is important to me, along with my Final Fantasy work (which I am planning to get sorted out) and other tattoos. They do each mean something different and each have an element of my own design in there too. My upper arm tribal was my first (10 years ago, it was re-done kindly by my tattooist) and is probably the one that people ask me about. I designed it during my AS Art modules and it signified my own coming of age. I had it originally done for my 18th birthday. I guess I find comfort in knowing that they are there and they remind me that I have overcome things in the past and will continue to do so. 

Loves

Wendy xx

My Coping Methods

My art is one of the things that I feel has made the biggest impact on my coping strategies. People ask me how I can sit for 14 hours straight sewing but honestly to me, when I focus on something that my whole body becomes involved with, it's like a holiday. A break from my illnesses and the not so good aspects of life. It doesn't go away completely but I find that putting the energy in to something positive makes me feel more grounded and not feel like a victim of some injustice. I have conditions but I choose not to suffer from them. There is a difference. I don;t think that this came down to some kind of punishment or recompense for any imagined slight, it just is as it is. It didn't "pick" me for any reason, it was just the way things panned out. To be honest, one positive I found of all of this was that it taught me to look at things differently, whereas like most young girls I was more interested in how things looked and getting worked up over the small stuff, rather than appreciating the small things that we all take for granted.

It comes down to how you look at things. I prefer to think about it as just part of life, not worrying over every twinge or every time my chest feels like it can't even take air in. Worrying can actually make you ill in itself, power of mind over matter, and it's all too easy to become obsessed with symptoms and all too common to sit there and Google a benign symptom and convince yourself that you're​ dying of some awful disease. Dr Google is a dangerous thing, go and see a real doctor instead who can give you expert advice. I work hard with my doctors to make sure that I'm getting the treatment I need, the care and support to stay alive and the best quality of life possible.

I'd be lying if I didn't admit that there have been (and will always be) days where I feel down or exhausted. Days where even the simplest task leaves me struggling and drained. There are plenty of those days and it's during those that it's more important than ever to try and keep a good attitude towards things and to remind myself that although things are sometimes difficult, they aren't impossible and sometimes they take longer than they would for someone without my difficulties. These are the days where having a coping strategy is the most important thing to have on your side. Something to keep your mind active and to enrich your day to day life. For example, I enjoy drawing, writing and am a huge craft fanatic. I love to see and have even recently brought a mini sewing machine, cute little gadget, to help me achieve more than ever.

My creative side started in music, I used to love singing along to the radio in the car and when I was 9, I started playing the flute. In my teens, I began playing piano and guitar. I've always seen music as colours, shapes and when I was younger, I used to follow them with my eyes while listening to my stereo in my room. I loved playing the flute, actually it was one thing I found hard to give up. The last time I played was before I moved out of my Mum's and my asthma was becoming more aggressive, it always was volatile but it was only after my 21st birthday that things just went haywire. The last 8 years has seen a very real decline and leads up to where we are today. I think that the importance of having ways to cope has been what has kept me going through it. 

I've always enjoyed drawing, I won't say that I'm a professional by any stretch but the things I draw are meaningful and often colourful. I think that drawing takes me back to my childhood, when I used to get brought crayons and felt tip pens by my Nan and Aunty Rose and would spend hours drawing pictures while watching videos (my favourite one at my Nan's was probably the Thomas one called "Coal") while my Mum, Nan and Aunty would be sitting in the room chatting. I remember that it always felt like I was in a safe little bubble and I could freely express myself without someone interfering or ripping my pictures up, dismissing them as "silly bits of paper" (my "Dad" never really encouraged my creative side, even though it was likely to have come from his side, my grandfather was apparently a tattoo artist). I think that when I moved to Rising Brook and selected my GCSE subjects, I had to take Art. It helped me through tough times too, especially when I was sent to have therapy for my depression at 15. When I draw, I'm back in that safe place and nothing can get to me. My Mum and Nan taught me to sew and my friend Georgina's Mum, Robbie, nurtured a desire to learn cross stitch. 

I now spend most days working with a needle and thread, it's demanding sometimes but I love it. Seeing it come together after spending days, weeks or even months on something is rewarding. My Dissidia Sephiroth piece is something that I always show people as it took me 3 months of work, even through the emotional upheaval of suddenly moving from the flat to the bungalow. That move wasn't easy as it was literally a case of one day things are normal, then the next I'm viewing a property and a week later I moved in. 13,000 individual crosses make up the piece and I felt like I was glowing as I mounted and framed it. Now it's prominent in my living room. 

This place has become a wonderful home, full of love and warmth. It feels as safe as I felt when we were at my Nan's and it's the best thing to hold on to.

Loves

Wendy xx

Better Spirits

I'm in better spirits today, even though my chest doesn't seem to agree with me. My asthma is being a bit of a nightmare for a couple of days now and I've been having to use my nebs more than we would like. It reminds me that I'm lucky really to have the things at home that I have. Being able to have nebs and oxygen at home has been a game changer really because before I had them, I was having to go in to hospital every few days and it did get very annoying for me because I just wanted to give up at times. One positive thing to say is that our Little Red (real name Gizmo II, we call him Red as a reference to Red XIII from Final Fantasy VII who is a a bit ragged and looks like he's been through the wars, this poor little chap has definitely been through a lot in the first few months) is getting more and more confident and a lot friendlier over time.

My Mum and her Partner Dave brought this little one to me just after Christmas last year after we lost our Kaiba-mop and we had to spend  time introducing him properly to Yugi and he's definitely put some weight on and is growing up well. Its only a shame that his ears will never grow out and he will always have a slightly shocked expression. He was a bit skittish at first but when I first held him, he just settled and nuzzled in to me. 

It's hard to explain the situation when someone has never been through or seen it themselves. It becomes almost second nature to me and I know the warning signs from a mile away. The problem is when you're so used to it but your significant other isn't as sure of things as they haven't really dealt with something so scary and how powerless it can make a person feel. I can't even imagine what it feels like​ on the other side of the situation. Its hard enough that you know​ that the pain you're feeling is upsetting someone you love because they can't just make it go away and they have to wait for it to go as much as you have to wait. Jace is very patient when it happens at home and knows what to give me to make it easier. There are times when even though we did everything by the book but my asthma was just too difficult but that is the nature of brittle asthma. For me, it's usually difficult because I live in an almost constant state of pain, struggling to breathe and being exhausted so I sometimes find it hard to identify when it's worse than usual. 

It's like a looming shadow. You know it's there and you know it's predatory, waiting for its chance, but it strikes without warning when you least expect it to. Often luring you into thinking that you have it under control and he worst is over for now, or so you think. Then as soon as you least expect it, or when you are just trying to do something completely mundane (like getting up to go to the loo or having a drink) and then it hits like being kicked in the chest by a horse. You cough, you wheeze and eventually things get so tight that you can't even breathe and you have to go and use the Nebuliser or ask the question "is this getting any better?"

The moment when I need to ask for help is the scariest thing for me. I don't rely on others easily, maybe its my nature or maybe its because so many people let me down when I needed them, I don't know but I have always tried to sort my problems out for myself. So last night kind of came as a bolt from the blue. I was struggling but I didn't feel like it was "hospital" bad. So I did the sensible thing and called 111. Basically, long story short a lovely doctor came out to see me, very quick and very professional in his conduct and yeah, I have yet ANOTHER chest infection. So it's probably going to be one of those "take the antibiotics, feel crap, stay in bed, feel more rubbish, sleep a bit more" kind of routines as it tends to be. I am working on something at the moment but its going to take me weeks or even months to get this done.

I have to say that I have always liked the idea of patchwork quilts. So I am making myself one. I've got some gorgeous soft pink fleece to line the inside of it as well as ideas for some special patches that reflect life and everything that makes me tick. And butterflies. Such beautiful and amazing little creatures, the way they flutter after spending time hidden away as they develop from a caterpillar and then emerge in spectacular colour. I also love the way they feature in cultures from all around the world. One of the most beautiful in my opinion is the idea the Native American legend that if you tell a butterfly your deepest wish, they will carry it high up in to the heavens and have it granted for you. I love that.

Also today, I had a wonderful email from Healthline that once more my blog has made it in to their top asthma blogs for 2017. This always makes me feel proud because I started this when I was in such a different place emotionally (and physically) and its my readers and supporters who have kept this going for me. So THANK YOU! to everyone who reads this and everyone who follows and finds something that helps them in their own journey. Also, you should check out the other blogs too, its nice to read other people's insights in to their lives and their emotional strength is something to admire

http://www.healthline.com/health/asthma/best-blogs-of-the-year#1

So, that's enough from me for now hopefully things over the next few days will be a bit more positive.

Loves
Wendy xx

OK So, here's a Rant.

I think that I am still feeling a bit uncertain about things. I'm sorry but this is a bit of a rant but it needs to be said as it has been going through my mind constantly for 2 weeks now. On the one hand, I am glad now that I know what is going on and that I wasn't losing my marbles, after spending ages trying to say the same things over and over, not like I have been trying to tell people things for a while and they just couldn't be bothered or have the time to listen to me, I mean, how would I know what was going on in my body right? I don't know, maybe its because they spend so much time dealing with people who don't have genuine problems and they become jaded or maybe its hard because not even the consultants were agreeing on what was going on with me a few years ago. Thankfully the consultant who threw it all in to doubt and confusion and made everything more complicated isn't around anymore and he can't try and play a deadly game of Jenga with my health.

I am glad I stood my ground on that one as well because that was wrong and it shouldn't have been allowed to happen. Maybe it bugs me especially because it was allowed to happen and had it not then maybe things would have been different. It is a sad truth that my local NHS trust has failed me and no one knows why I slipped through the net as many times as I did. Why didn't they listen to me? Why did they ignore the data they had right there because it "didn't fit" with what they wanted it to? Someone was held accountable and things did happen as a result but thats little consolation considering now that I have to live with the consequences and no amount of "You're very young to be going through all this" or extra money from PIP will ever make that better and that's what makes me feel so angry about the whole thing. I am unlikely to be able to recover fully from all of this and the damage has been done and it can't be undone.

It's been a bit odd because even though I knew myself what was going on, to have it confirmed was like saying "I told you so.." to the teams of doctors and nurses who were making decisions about my treatment without properly investigating as to why things were the way they were, I think that was probably careless at best. At worst, they could have removed something from my already complicated regime which could have resulted in a serious situation, like when they tried stopping my ipratropium, switch me back to Seretide and try to stop nebs in total, which went really badly.  Although from that EDS, it was telling a completely different and untrue account of things, the truth had been that I had been mistreated by someone I should have been able to put my trust in and the consultant made fun of my mental health in front of a whole ward of patients and nurses. Being told that I needed a psych assessment not medical treatment.

I was glad that my psych at the time spoke up for me and said "No, she isn't going mad, she needs to have her asthma helped because its making her life hell." and another doctor took a look at me and reinstated all the meds that the other fool tried to cut.  In some ways, having what I was saying confirmed was a bit more troubling because it was like I had had to fight to get this properly looked in to and to get whatever treatment I have already and it annoys me because I shouldn't have had to. I'm not going to be one of those people who decides that they're entitled to everything when they aren't but I was being denied the basics at times. It took a long discussion with the o2 nurse to get the sleep study done (at my request) as well as me badgering the doctor for new lung function tests for 6 months before they were done (

That experience was awful and so humiliating, luckily the nurses backed me up when I complained. Luckily as well, it was only a one off, I never allowed that consultant near me ever again. I remember being so angry about how I was treated on that admission and it was like I hadn't been through enough as it was and then that happened. Maybe that's the thing I am struggling with, knowing that they were going on little to no real evidence and trying to make huge decisions about things that would really affect me and my quality of life. I think I wanted to ask "So, anything else about MY life that you think that perhaps I would like to know?" on more than one occasion, but I managed to hold my tongue. And believe me, that was hard. The lasting impact has been that I have been too frightened to go in to hospital and will push to try all at home options before throwing the towel in and giving in.

I think that demonstrating the actual, real story of what I have to contend with when it comes to my lungs may have been a huge part of this. These tests have been important to us because they have re-identified the clinical indications for my oxygen and other medicines. I did all these tests before bit the reports for the results were minimal and often ignored what was right there, no idea why that was but apparently 10 year old basic spirometry results have more bearing than a full lung function test taken in the last month, doctor logic? This has included a whole host of new tests, scans and other things that I had to do over the last year or two. I said a while back that I was willing to humour the doctors and nurses with whatever they wanted to attempt to do to/with me and work with them because lets be honest, had I not, well I don't want to think about where I would be now and what state I would have been allowed to get in to had I not been as assertive and wanting to get this straightened out once and for all.You can't spend a whole lifetime avoiding something just because its not convenient.
 
Unfortunately, avoidance never works for anyone. Ever. Ignoring that little niggling pain often allows it to get worse. Its better to just bite the bullet and get things checked, especially when there may be a slight chance that things could be better. OK so it could be difficult and it could be a bit final on some things when you want to still have some deniability with. I think that although I was the one who suggested it, I was the one who needed the most convincing that I wasn't mad and that things were really happening and the reality was that this disease does have an effect on pretty much every aspect of my life. Whether that be from having to plan everything down to the last moment (knowing what I need/when I need it, do I have enough oxygen on board/ how long will I be out for?) to having to sit for a moment and recover from just doing simple little things.

I don't think that I ever expected to be turning 30 (well we didn't ever really think I would get this far at some point or another) and have nearly that many meds on a repeat prescription, but that's how things panned out. As much as I hate the fact that my lungs don't play ball anymore, it isn't something I can really do much about and to be honest I have accepted that, well I had to, didn't I? I couldn't just stamp my feet and have a hissy fit over not wanting to be sick anymore because it wouldn't change that. You just learn to make the best of the situation even on the bad days. Even the days when you feel like you just want to wave a white flag and give up, and there have been a fair amount of those days, trust me.

The key thing is finding little things to make you smile. For me, its the small things like the funny "Wheee-eeeeeee!!" sound that Yugi makes when he comes up to see me or watching Loki as he binkies (a kind of weird hop that bunnies do) and of course watching Little-Red popcorn and snuggle right up to me as hes being handled, or that derp-face! There is a magic that animals have, I know it sounds corny and a bit silly but my animals are the closest thing I have to children. I have raised them, taught them right and wrong and loved them from their cutest to when they have been going through the "naughty" stages. Raising animals fills a need in my life to need and be needed by someone. They may not be humans and they only stay with us for a while but the love they give is so real and so precious. I have never lived in a home where animals haven't been a part of it and its not something I think that I could ever do. After all, an empty home is like an empty heart. I have always had a thing for small animals, particularly hamsters, guinea pigs, rabbits and even rats. I think that there is so much character and personality in them and they really are fun to get to know, and contrary to what people think, they aren't stupid either. My pets are what has kept me going when nothing else could.

Since Jace came to live with me, things have been so much easier and we are both really happy together. We have our own little bungalow in a quiet area, lots of space and a large garden. We may not have the lastest games consoles or the latest other things but we have one thing that no money could ever buy, we love each other and to be honest, that is something to keep going for in itself.

Loves
Wendy xx

I think that if you have a long term health issue, you are going to have days where you just want to dive under the covers and not move. Even with my efforts to remain positive and pragmatic about things, when I have a rubbish day due to pain or my asthma being difficult, I do have the urge to curl up, turn off everything and just try and muddle through. The thing no one ever warns you about is that sometimes things aren't going to go the way you want to them to and there are times when you will feel the sting. 

Today was one of those I think. I woke up feeling out of sorts and it never really got much better as the day went on. I've been feeling like crap while fighting this fungal infection and it's been one of the hardest to kick off. I'm on my last couple of weeks of itraconazole and I'm hoping that this feeling I've got is like the infection's last stand before it leaves. It had started to affect other parts of my body as well which was not nice at all, I'm pretty sure that the worst parts of the skin are now scarred and it took a while to flush my waterworks (although giving up regularly drinking fizzy drinks has helped, a lot with that and my Crohns hasn't been so painful either so that's good) but it's not going to win this one. 

I recently gave up on fizzy as I noticed how expensive a habit it was and how much of a waste of money it was too. When I moved in to my bungalow, that new year I had resolved to cut energy drinks from my diet completely, after all, they are really bad for you and all the caffeine was probably part of the sleep problems I have. I'll admit that the withdrawals from it were tough and I had headaches for a few weeks. There were times when I wanted to say "Sod it" and to and buy a crate but I'm glad I didn't. And now I'm not even drinking things like Coke or other fizzy pop on a regular basis, I'm noticing a few things. My teeth look better and I'm much less jittery, my stomach isn't full of gas so I'm not so distended around the gut and my moods are stable too (I asked a doctor about this before, they said that energy drinks can have a profound effect on certain parts of bipolar, especially manic episodes). 

I did have an interesting phone call from the oxygen nurses. Basically if you're on home oxygen they send someone in regularly to review you, make sure you're not over or under using your oxygen equipment and that what you have is fitting your needs. Home oxygen is a delicate thing because if it's mismanaged then it can actually do more harm than good. My nurse and I spoke at length about the issues at night, some of which include desaturation and sleep apnoea, which was never formally investigated and they had only had what info they could get over a year ago which wasn't even accurate as it was when a consultant was actually trying to ignore my conditions and refusing to listen to me, other consultants or nurses. Funnily enough the prat doesn't work for the trust now so we've looked in to what and why things happen the way that they have. I'm glad we did, even though it was difficult and it's brought about some life changing results but it was ultimately a huge "I told you so" moment. In fact, they now have the information and clinical indication that the stupid guy tried to cover up. It was a bit of a hollow victory though because it kind of removed any kind of doubt or deniability on everyone's part. I just hope that this will lead to something being done to help and maybe even getting a decent night's sleep for a change. 

Last night was anything but decent. I was coughing up stuff. To be honest, it is nothing really that strange in itself but it was more in quantity than usual. I literally felt like I was trying to cough up a lung or two and it did get (and still is) very painful so I have had to be careful today and keep up doses of pain meds and other things to make sure that this causes as little bother as possible. The problem is that I am physically and mentally worn out and just want to curl up and sleep, which is difficult when you're in pain. I'm a little worried that a ride with the men in green may be on the horizon but I'll do what I can before I let that happen. Especially as it's someone's​ birthday this weekend and I want to make it the happiest I can. 

Loves

Wendy xx

Tough Week, More than likely to continue

Ever feel like you're chasing your own tail when you're trying hard to work around certain personality flaws or issues. I am very aware and I know that I suffer from OCD (Obsessive Compulsive Disorder, and NO, it isn't just an obsession with cleaning) and it manifests itself in ways that are a little bit odd for most people to understand. A part of my personal OCD (apart from the excess use of hand sanitiser) is that I am always apologising to people for everything from moving slightly (because I think that I inconvenienced them) to simply asking for help or for a drink or something (because in my mind I always think "Who are YOU to ask anything of anyone. You don't deserve help.") and its even happened as a result of calling 999 during my asthma attacks. It's a tic I've developed as a child that has never really gotten better.

It's annoying. It's frustrating. It even makes me aggressive towards myself if I try to stop it (I have been known to self harm from pinching myself to slashing my arm open with a huge knife.) and it's sometimes hard to prevent. It's like, if I don't keep apologising. I am scared of something bad happening.Usually because when I was a kid, when I didn't apologise constantly to one of my brothers I was "taught a lesson" or "disciplined" in any way that he saw fit. I don't really want to go in to the full story as I find a lot of it is hard to think of, even now after 16+ years but it left a mark on me, inside and out. Its hard to think about and its hard to even put in to words because I know that it makes some situations more likely and there are people out there who have taken advantage of this. Usually when it involves them gaining money or possessions from my vulnerability and my own generally wanting to avoid being "punished" again.

I won't go in to that now as it isn't really worth chewing over again and again, I would much rather keep on moving on with life because it's a better way around things. Besides, it annoys the people who try and make you out to be the "bad one" all the more if you keep moving with your head held high! I made an active decision nearly 6 years ago now that I would not let anyone make me a victim. I've moved on so much over the last few years and to be honest and most of that has come from when I left the old place and moved in to the bungalow and it has just gone from strength to strength since Jace moved in and our lives became shared with each other. To be honest, when I left the flat that last time, it was like closing the door on a chapter of my life and I've improved mentally since leaving it behind. I think my aim in things is to keep striving forward, learn from the mistakes (and I've made my share over my 29 years) and not repeating them. People who hurt me are out of my life for good and they aren't ever going to get back in. To put it bluntly, to let someone who made you feel that way back in to your life is like scooping a poop out of a toilet and pushing it back up your bottom! You just wouldn't do it. Or I would hope!

It isn't just the mental stuff that has given me trouble recently. I think it's just the fact that I have had a really bad infection and that I have been feeling a bit worn out by the smallest things (typical for me when I get these kinds of infections really) and it is just taking a toll on me a little. That's OK though, infections take time to heal from. I was also thrown a bit of a curveball by my review with the respiratory nurses at the hospital. To cut a long story short, we needed to work out what was happening with my oxygen levels and in a weird way redefine the clinical indications for my oxygen (it got a bit muddled as there wasn't a lot of data to go by from recent tests, actually parts of my records went missing and the nurses were using old instructions to work out what the doctors wanted, it's embarrassing that they quote one letter a year before they saw me and I had seen the consultant since then, no copies of EDS and a great deal of inaccurate information) and general breathing when I sleep. I snore. I snore terribly sometimes and I'll be honest, it is really embarrassing because it is so loud. The other problem which Jace (and other people have pointed out, but why this was never looked in to I have NO idea, think someone dropped the ball here) that I stop breathing in my sleep.

Annoying thing is that I had to ask for the study to be done just so that we had the evidence of what I have been saying for years. The study we did pointed to low oxygen levels at night and sleep apnea. I wanted this sleep study done because I wanted to put things in line and get everyone singing off the same song sheet. Now if only my CT scan from 2 years ago had more available to view than a 1 line report saying that I don't have bronchiectasis and this was all shared with Heartlands (other than copies of the test results that I brought to them) as well as the planned admission which they wanted to do 2 years ago (but haven't had a bed spare), we could be well on the way to a more effective treatment plan and a vast improvement​ in my quality of life. I don't want to be tethered to this and that and I would give anything to be tube free.

SA is basically where for whatever reason the airways collapse when you fall asleep and your lungs are working extra hard to supply your body with oxygen. The body does counter this in the way of making you wake up a little (often with a rather harsh snort) and the result is that you don't get enough decent sleep. Obviously this in itself has its own set of issues and not sleeping can really have a dramatic effect on your physical and mental stamina . The nurse explained that because of my lungs being as they are and now this, it's like I'm not able to charge my batteries so I'm pretty much like a laptop that can't​ hold a charge. So that explains why my oxygen levels take a nosedive at night and I wake up feeling like I hadn't slept, which of course exacerbates my other conditions and it becomes almost like a domino effect. Because everything feels worse when you haven't had a good night's sleep. So once the doctors decide the best plan for me, I will be starting on CPAP (continuous positive airway pressure, a type of non invasive ventilator which will involve me wearing a mask that will force my lungs to stay open). I'd be lying if I said that it wasn't bothering me but this is life changing but I have to see this as a step forward rather than a setback.

Loves
Wendy xx

Keeping Busy

So, just lately my intestines seem to want to wriggle their way out of my belly button. For 5 weeks now I have been having pains whenever I eat anything and have spent hours on the "throne" trying to get rid of this feeling. It has been like I was trying to digest boulders and I felt everything move from the top, right round to the bottom which in a word was awful. So then I discussed with the doctor who said "well we did say we suspected Crohns and this certainly supports the diagnosis and the tests you had done". I'm being given another medication to help with the spasms and stomach pains and to make food easier to tolerate but this is a problem which I have been warned can wax and wane at any point, a bit like my asthma actually.

On top of that, I then find out that the fungal pneumonia is back (I get issues with this often if I'm run down). We  took a sample of the gunk to the doctor and he listened to my chest before saying "You have another acute infection." There has been a bacterial aspect as well and I have been on a grueling course of antibiotics as well as starting on a course of strong antifungal medication to clear the rubbish. Theres been a bit of blood in the stuff I have been coughing up but that usually means that I have been coughing a lot and that inside my airways is sore. It isn't a pleasant thing to experience and it does make me feel quite washed out and tired. It takes time to clear as well and it can also cause other complications as a result. I'm not overly concerned at the moment though as I am holding my own at least but it is starting to wear me down a bit more than I would like to admit.

So I have been a bit quiet recently because I have been spending a lot of time just lying in bed trying to shift this rubbish, although my Opus 1 booster pack box did provide me with some welcome distraction to it all. I am a bit of a TCG junkie these days and I find not just the games to be wonderful but I like collecting the cards as well. I've been cultivating a rather lovely collection of the Opus 1 series and am readily awaiting next month when Opus 2 hits. There looks to be some things that both of us want from the set and of course I do intend on completing my collection of Opus 1 cards too, but that is something to work on and of course it keeps me occupied as well. I am poud of my collection folder but its something that we can enjoy doing together. I have also started to sell cards that I don't need or have loads of. This way generates a small income which I can use to get more cards, kind of like paying for themselves. Getting myself a little reputation for being a good seller too.  Collecting trading cards is something Jace and I share with each other. Between us, we have a lot of Yu-Gi-Oh and Final Fantasy cards. His deck of choice is based on Final Fantasy X and mine on Final Fantasy VII and we are proud of our decks and we love how much fun the game is. Cards of much loved characters and it's still growing. .

I was supposed to get my new wheelchair, but there was a clerical snag BUT we are now just waiting for that last bit of notification to say "Approved" and that should be done in the next few days. The chair is built, tested and ready. Because I am on enhanced rates for both my PIP components (PIP is broken down in to 2 components, mobility and care), I am entitled to use the Motability scheme. To someone who doesn't know, Motability is offered to people who get the enhanced rate of the mobility component to lease either a car, scooter or powered wheelchair. You get a lease for 3 years so you don't own the chair, but this does mean that any issues you have can be resolved a LOT easier and after 3 years you are offered an upgrade (if you are still entitled) and when your lease ends and you continue with them, you get a bonus as well. So that is kind of nice. The new chair is basically a few models better than my current chair. I have a Karma Ergo-Traveller at the moment and it has served me beautifully. The new chair is a Karma Falcon which has a number of brilliant things that it does, such as the way you can move the armrests to allow ease to get in and out as well as kerb walkers and an oxygen bottle holder. Things that to someone like me make a difference. 

Although on reflection, these things also serve as a stark reminder that I am one of the "lucky ones" whose PIP was sorted almost immediately and without any kind of problems. Then again it is probably hard to deny that my disabilities do have a profound effect on my life and how I live, I know this. I have had to accept this. I hate it when people assume that people with disabilites are a certain way. Like if you aren't in a wheelchair then you can't be disabled or that people with anxiety are all just "taking pills and staying at home" (such an offensive thing to claim) and certain illnesses "can't be THAT bad because [insert name here] has [insert condition] and -THEY- get along just fine..." I suppose ignorance is bliss really.

So where this leaves me now, well I am just doing what needs doing, resting and keeping on top of my meds and trying to keep my asthma from flaring up. Yesterday was awful and I am really suffering for it today but knowing me, I will find something nostalgic to watch on YouTube, snuggle down and carry on working on my own Terraria "Railway" idea. I was inspired recently by the adventures of a certain blue tank engine and well, since I started work on it, I haven't been able to put my project down! I spent nearly an entire day crafting this out of materials and I have to say that I am really pleased with how it turned out. Even down to the use of marble for the face and the gold number 1.

Loves

Wendy xx

Overwhelmed

One thing I have learned through the last few years was that if there was nothing to worry about, usually they don't push for follow up. No news is often good news. I think its a bit of  a worry when something comes back from a test, especially when it is related to my respiratory health. My lungs aren't getting better, and I know all too well that there's a distinct possibility that they never will. Does this scare me? Of course, but it makes me more angry than anything. But it also makes me determined to defy the odds as I already have. The doctor was sure I would never get to 25 and here I am, still here.

I'm sometimes angry because I see all the people I went to school with, they are living their lives, be that from getting married, ticking off items off their "bucket list", travel or parenthood. I feel angry that because of this disease and the things that made that worse, I probably won't know too many of my dreams. I don't blame people for having wonderful lives, in fact to follow some of the people I grew up with and seeing them as they are now is amazing. I guess the thing was that at 29, I didn't ever expect to be constantly battling chest infections, struggling to even breathe or do every day things. I definitely didn't expect to be disabled to the point where I am practically stuck in a wheelchair and relying on oxygen and nebuliser medication. Maybe it isn't really anger, maybe its a little bit of jealousy because my life didn't pan out the way theirs did but that doesn't take away from everything I have managed to achieve in life so I suppose it balances out.

I don't see the "enhanced rate" of PIP as some kind of bonus. I don't actually WANT to have to have extra money from the government, yes it helps but it also makes me feel sad. Sad that I have to rely on this kind of thing because I can't go out and do the things I want to do. I like to work. I like to keep busy. I hate it when people tell me how "lucky" I am to get high rate disability benefits. I'm not lucky. I'm anything but. I hate it when people say "Oh well, I wish I could get as much as you get on benefits" but it only fuels the anger I feel inside. It makes me even angrier when people attempt to take advantage of me but that is a whole other kettle of fish.

So recently I had a sleep study done. This basically involved me having to sleep while wearing 2 pieces of monitoring equipment. One was to measure the respiratory output while I slept, including how much effort my body makes to breathe, air flow and whether or not my poor sleep recently is down to my lungs basically not liking to work anymore. My lung function is around 30-40% on a good day and on a bad day it is closer to 20-30%. That is scary because it doesn't hit home until you attempt to do some seemingly normal activity and then it knocks you for six. You never realise that something as basic as brushing your hair or taking a shower can be exhausting. Basically I may have to have a machine to help me breathe at night although my oxygen levels at night were also something of interest, I will find this out in March. The main thing I am concerned about is the results of a sputum culture that I had done last week. The results came back quickly (which they always told me was a bad sign) and they have called to discuss this. I feel a little wary as to what was found but in a way maybe that is a good thing because if they know the enemy, so to speak, they know the best way to fix it.

So right now I am struggling with an infection of Candida in my lungs and a heavy flu. With brittle asthma as well, this makes for a really vile cocktail in terms of how it makes you feel. I ache. I feel hot/cold. Sweaty and shivery and of course totally sapped of energy. Basically to put it in words, it feels rubbish but to be honest, at least we can get something sorted and after some help I will be back on my feet in no time at all!

Loves
Wendy xx

Its overwhelming really because there is so much already going on and I really can't stop what is happening altogether and focus on one thing, it just doesn't work that way. It's all come at once really and I feel kind of powerless to do anything about it. I know that I have to keep going and push through it but I feel like I just want to sleep for a month or so.