For life's little ups and downs.

A rather quirky, funny and sometimes daunting look in to the life of someone who has a lot of health problems but does their best to keep positive. Punctuated by guinea pigs, anime, superheroes, transforming robots and cross stitching.

I started this blog to tell my story, about who I am and what I do. On top of the health problems and raising awareness for those, I also use my blog as a way to help promote other causes, particularly ones which affect the most vulnerable. I live with a number of different and complex health problems but I refuse to let anything get me down. I know how it feels to be discriminated against or thrown aside. This is me. This is my life. I live it and do what I want with it. Nature sets the limitations. We set the boundaries.

About Me:

A blog about life. I live with Bi-Polar Disorder, Obsessive Compulsive Disorder as well as Type 1 Brittle Asthma, Various Allergies, Neutropenia, Chronic IBS, Osteo and Rheumatoid Arthritis, PCOS and Osteoporosis and Heredetary Spastic Paraplegia. I live with these conditions, but I refuse to let them keep me down and out. I still try and make the most of my days despite being so poorly and having to rely on my wheelchair, nebulisers, nearly 50 pills a day and 2l/min of oxygen.

I'll flap my broken wings and erase it all someday... You'll see.

Tuesday, 23 May 2017

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.

Wendy xx

Tuesday, 18 April 2017

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

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

Wendy xx

Thursday, 6 April 2017

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.

Wendy xx

Wednesday, 29 March 2017

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. 

Wendy xx

Tuesday, 21 March 2017

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.

Wendy xx

Tuesday, 28 February 2017

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.

Wendy xx

Friday, 17 February 2017


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!

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.

Saturday, 21 January 2017

No Quick Fixes...

Although my asthma usually spends most of the time in the limelight (as it is my most dominant and severe condition), there are times when other conditions I suffer with can show me how much of a pain they can be. My health isn't a simple case of "take this pill and get better" and I know this. In fact, there aren't any "easy" answers to all of this and this is something I have had to learn to live with. Even if it seems harsh and unfair. The worst thing about a lot of conditions I have is that there aren't any magic cures to make it better and often it comes down to just managing it and firefighting the symptoms as they occur.

Right now, it is one of my lesser conditions that is causing me a bit of grief. Since I was 17, I have had a condition that a lot of women have called "PCOS" or Poly Cystic Ovary Syndrome. Basically it means that my ovaries become covered in cysts. Some of these are harmless and go away but lately, I have had a particularly bad one on my right ovary. This one seems to be aggravating my IBS (Irratable Bowel Syndrome) and as a result, I can't really face the idea of eating as it feels like rocks going through my gut. There are other issues around it as well but as you can imagine, theres only a certain degree of graphic that I think should be here. Lets just say this, I am glad for the grab bars in my bathroom or I would have nothing to grasp during particularly painful moments!

Having IBS means that of course, I have to be careful of certain foods that "trigger" the issue. Dairy seems to be the big one for me and often eating milk or dairy can result in some volatile reactions, cramping and (embarrassingly) wind. It can sometimes be so severe that I would happily eat nothing at all for a few days than have to suffer the pain of actually digesting food. This has been a bit of an issue recently and as a result I feel run down and really not well in myself. It doesn't help that my mind is giving me issues as well and I have spent the last month constantly apologising to people (mostly to Jace, even for something innocent enough like reaching over to get something or just moving slightly).  It is a bad habit of mine and I think it is a part of me thinking that I did something wrong when I probably didn't. I get very upset with myself more than anything I think.

When I get run down, that's when my asthma really gives me cause for worry. I think that my general health is off colour at the moment and this worries me quite a lot as there is so much going on around me at the moment too. I kind of feel like I can't get this right and that I am unworthy of anything, my personal confidence is currently down but I am trying my best to make this better. Even if it seems hard at times. I'm trying to find positives in things even on days where I would sooner just crawl in to a hole and there are days like that when things just seem to mount up. I feel at ease now because the things that I was concerned about are sorted and things are getting better. Thats the thing about life, as many curveballs as it throws, it also throws good stuff your way too, you just have to keep your chin up and remember that you have beaten things before. You will beat them again.

Oh, and give yourself something to look forward to. For me, its the Sephiroth promo foil card that Jace helped me negotiate with a seller for. There were only 60 non-foils given out and about 20 foils so this card is rare, its beautiful and its going to enhance my deck in ways that we could only dream of! Of course this also means that I now one of each Sephiroth card currently available!

Wendy xx


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