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