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.

Wednesday, 6 September 2017

Good Days/Bad Days

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

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

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

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

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

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

Loves
Wendy xx

Friday, 18 August 2017

Free Time?

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

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

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

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

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

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

Loves
Wendy xx

Saturday, 12 August 2017

Mental Health

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

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

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

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

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

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

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

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

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

Loves
Wendy xx  

Thursday, 3 August 2017

Fighting.

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

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

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

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

Loves
Wendy xx

Thursday, 20 July 2017

For Chester

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

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

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

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

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

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

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

Loves
Wendy xx

Thursday, 1 June 2017

First of the Month

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

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

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

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

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

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

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

Loves
Wendy xx

Wednesday, 31 May 2017

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

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