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 Type 1 Brittle Asthma, Bi-Polar Disorder, Obsessive Compulsive Disorder as well as Various Allergies, Neutropenia, Crohns Disease (my IBS was rediagnosed as Crohns), Osteo and Rheumatoid Arthritis, PCOS and Osteoporosis and Heredetary Spastic Paraplegia. I have recently also been diagnosed with Sleep Apnea (which makes me stop breathing in my sleep) 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 and CPAP.

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

Friday, 6 July 2018

Dear any doctor who advocates pain acceptance,

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

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

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

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

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

No one asks for this.

No one should be denied help.

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

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

Wendy xx

Sunday, 20 May 2018


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

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

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

I think that one of the things that comes to mind though about living in a bungalow, especially now the weather is warmer, is that impact that people's lives when you have a nightmare neighbour. I'm not going to say that I'm perfect by any means and sometimes my garden looks a bit overgrown but I do try and keep noise down especially. I've lived with people making a racket all hours of the day and night and know how miserable that can make a person. When you're putting up with that day in and day out, you stop being able to sleep which makes it hard to function and actually has a massive impact on your immune system. People who are stressed out are more likely to suffer from illnesses. My own immune system is a bit rubbish due to prednisolone and my lungs are particularly weak as the years of stress and generally being unwell have caught up to me. I'm not as young as I was and don't always bounce back.
It's funny to think that 8 years ago was when I finally empowered myself to change things for the better.  I'm going to be honest though, I'm glad I've been making changes to how I was back then. Its proof that you can make positive changes in life, even if it doesn't always feel like it. I'm not saying that it has always been easy but it has been worth it. I'm still a work in progress but I can actually believe that I have a future now (even if some doctors are skeptical about just how long or what kind of future it'll be, others seem more optimistic, I'm more inclined to be positive) and I'll still be moving forward and making each step of the journey count.

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

But it's my reality.

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

Wendy xx

Sunday, 29 April 2018

Keep Going.

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

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

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

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

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

Wendy xx

Thursday, 15 March 2018


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

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

I wish there was some cure for all of this.

I really do.

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

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

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

Wendy xx

Saturday, 20 January 2018

3 Weeks

I know it's been a while but so much has been happening that has been personal in nature so I'm kind of summing up about 3 weeks worth of stuff in one blog (first blog of the new year too, happy New year) but I've just not had the energy recently. It's not just with blogging either, I've been running out of energy to do even simple stuff and my lungs have been painful throughout the experience. The day after Boxing Day, doctor called at the house to check something, take bloods and generally assess as to why I have been s unwell. Turns out that I have yet another of those horrid chest infections that I'm prone to and a lovely bit of pleurisy to go with it. It's not all been bad though, to cheer myself up a bit, ordered items from Lush, basically my favourite products come out for Christmas so in the run up, I stock up on these to make sure I last the rest of the year! I love Snow Fairy and the Twilight shower gels, they smell incredible! And my asthma doesn't seem to mind them so much. There's a couple of new things I'm trying out too, solid shower gel (looks to be like a soap but it smells amazing!) And something called a "sparkle jar". Basically a massage bar (solid body moisturising oil) with a core full of dusting powder. Now I can enjoy the soft smell I adore whenever I want and this does make me feel happy. Lavender and Tonka (which smells like vanilla) is soothing to me and when it's on my skin and bedding the result is a calmer, happier me.

I feel pretty good about how CPAP is going for me but I still have my own personal feelings about it. One of which is that I'm still unsure as to whether or not I like having to rely on yet more medical equipment in my home. Along with my CPAP, I have still got oxygen and nebulisers to maintain as well as things to help me move around on a day to day basis. I'll admit that it does feel very strange, like when you play with a vacuum cleaner and it sticks to your skin! 
My back has been a nightmare recently and because of my uterus being retroverted, my monthly cycles  can make it worse. Since my back has gotten worse, I find it hard to move around properly and often suffer with numbness in my lower extremities. The thing with HSP and my curvature of my spine (which is getting worse due to osteoporosis) is that the long nerves that send signals to and from my brain are pretty much dying out slowly. My nan (dad's side) has the same and I always remember how much she struggled to get up from her sofa or up and down the stairs. I understand now what she must have felt. Especially when she broke her arm from falling over and never really went out alone again. I didn't understand why and what that must have felt like until now. When you fall over, it does affect your confidence and it's easy to become frightened of that, especially when you really fall and injure yourself.

My wheelchair has meant that at least I'm not stuck at home all the time. I may not like to venture too far but being allowed to is the best thing. Being stuck indoors and staring at the same walls day in and day out can become very frustrating and the feeling of frustration can turn to depression and then the worst thoughts come in. I'm not ashamed to admit that there have been days where I sat there with a pile of pills sat there and just getting the courage to swallow them. And there's even been times where I have done things that I regretted afterwards, I did those things because I just felt so desperate and as though there wasn't any other way forward. I'm reaching out more to people now but it's really not easy for me to talk to someone about how I feel, I've always put the barriers up to protect myself from other people. It makes it very difficult to get close to people and show affection. I do feel it, I just struggle to show it.

Then I came down with flu. Flu makes anyone feel terrible so imagine how an asthmatic feels with that making those lungs work more and feeling drained and exhausted. That's where I am at the moment. I feel drained and tired, my head and neck ache, my back feels like it's been subjected to a horse trying to jump on it and my sides feel tender and sore. In all, one very unhappy Wendy! The there was more bad news that my blood tests showed that I was in trouble as my red count was extremely low and have been put through a myriad of tests to work out why. We're waiting on the results but I was started on Folic straight away, I'll be able to say more when we know it. I'll find out on Monday what my further bloods came back with but it's been flagged up somewhere.
I spent the last 3 weeks either asleep or sorting through the large cache of Yu-Gi-Oh! cards that Jace's dad brought over from Blackpool. I thought that my stacks were big, they had nothing on those! Although, I did learn about and how to play another TCG, Cardfght! Vanguard. So now I'm involved with 3 TCGs. I think that card games have helped me stay sane over the last few years when my lungs have decided that they want to be anything but! I've finally completed both of my Zane character decks and they're ready and raring to go! But I've also been working on other character decks and some theme decks too so those will be exciting to show off. I've got some really rare cards and playmats which will be nice to see.

We did lose our little Red and we did take in another pig, who was unfortunately poorly, so for now it's just Yugi and Tristan who are bounding about and squeaking for food! Love them to bits though, even if Yugi is a little turd at times! His latest game is to wait until he hears humans and then squeak as loud as he can to get us to go in and give him food! He also has a habit of turning on the charm and trying to look as sweet as possible so that we melt and give him stuff! It does work as well as when it comes to guinea pigs I am the soft touch and they have me wrapped around their little paws but they are just so sweet and loving that they deserve all the time, love and care that we can give them.

So, that's about it really.

Wendy xx

Monday, 13 November 2017

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.

Wendy xx

Thursday, 2 November 2017

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!

Wendy xx


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