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.

Sunday, 28 April 2013

It's always fantastic when you rediscover something from a time gone by, but its even better when you can take a lesson in sociology from there. I was watching the first few series of the Simpsons (bear in mind that these came out in 1989 when I was only 2 years old, and I remember watching them at that kind of age) and it was interesting to see how the world changes around them, when the characters never seem to age at all. Even when you look at simple things like the things in the houses which we wouldn't even give a second glance, things like games consoles, personal music players and even the politics of the day are reflected in a fascinating display. If you have never seen it, I really recommend giving it a watch.

Just these last few days, our little baby Kibou has really been showing just how much of a little character he is growing up to be. When I got him, he was tiny and shy, barely interacting much, yet at the moment he seems to be lapping up the attention. His favourite game for now seems to be running around the cage, popcorning happily and then squeaking when we pick him up to play, he then proceeds to nuzzle necks and lick cheeks sweetly. The last time I ever saw a guinea pig with such energy was when I had my Patch. I miss that crazy little ball of fuzz.

I decided today that I was going to start a new diary. I do love keeping my journals and they are a good place to really get out what it is thats bothering me in a private domain, a place to share my joy and my sadnesses. I love my original diary and I do feel sad to move from that book, but I'm just not in the same place I was back then. Whenever I read it, I always remember how angry I was or how vulnerable I felt and how trapped in my own body I felt. I've moved on and grown emotionally and I am ready to keep going in my life. I have a lot to give and a wonderful network of people to give to. I was having some time to think earlier when I was wandering around town and I looked at how people react to each other, how they smile when they greet each other and how some of them greet perfect strangers with a polite "Good Morning". I love going in to the shops I like and talking to the staff, the guy in CEX who sold me my iPod still asks me how I'm getting on with it and whether I've managed to fill all 32GB yet!

I've also been working on something of a project. My DS was looking a bit on the battered side and well, I think it needs a nice make over, perhaps with a subtle touch of something a bit more, well, me. I started with giving the console a wipe down with some methylated to got rid of anything that could cause bother with the refinishing (not to mention wearing a thick dust mask and working OUTSIDE!). Once that was over, I applied the sparkly wing decal in just the right place ensuring that is was affixed properly. Once that was done I applied a layer of clear acrylic laquer which has so far been buffed up to a shine and smoothed out (including smoothing out where there were some light areas of damage) ready for another coat of clear acrylic to finish it completely. Once it's done then I will have something that is truly one of a kind and personal to me. Which is something I always appreciate.

I've had a rather quiet, pleasant weekend actually and have spent some good time just doing the things I love with someone I love spending time with. We learn from each other in a way that really makes us strong, I learned, for example to just enjoy myself, let myself be free and if anyone has a problem with it, then they can sod off, this is my life and I intend to live how I want, not by anyone else's standards or decisions, I am in charge of my life and I decide whether some one is or isn't a part of that. I worked so hard to get to a state where I was finally feeling a lot healthier and I know now not to take anything for granted because, as I know now, things change and often without a moment's notice. Live for today, remembering that those who carry their past on their backs don't live at all. If we spend time with the local kids and show them our animals or let them come and talk to us (parents round here know us both anyway and we are active members of the community) it doesn't really matter too much about what happened to me years ago, what matters is the then and there, when we're teaching them how to hold a guinea pig (or where he likes to have his chin rubbed just right) or what they like to eat, then its nice and it feels all the more worth it.

On reflection however, we have decided that it was for the best that we don't get a puppy, I think we're more in to pets of the caged variety, a puppy would mean a lot more work for both Becky and myself and to be honest, we have our hands (and laps) full with the creatures we already have and well, what with my declining health as well, it just wouldn't be too wise. Besides it would be even harder for medical staff to help me if I had a dog running around here (as much as I love them) and it would be anything but practical.

So I guess thats all I really have been up to recently, going to get back in to my pajamas, slap on a Disney film and maybe rest for a while, down to an hour and a half between nebs and well, its starting to get a bit worse, if things do go down hill, I hope that it won't be too hard to sort out.

Loves
Wendy xx

How I Fixed my Omron MicroAir (In Detail).

The best thing about posting something about things that make our lives easier is knowing that somewhere, someone will read your post and they can benefit from your own experience in a positive way. When I had to repair my nebuliser, I remember speaking to friends, other people who use the same technology as I do and are just as dependent on it to do a specific (and in some cases vital) task at the exact time I need it. When these kind of things start having problems that can have a drastic knock on effect.

For example, when my Omron was playing up, it would take me anywhere from 30-40 minutes to nebulise around 5ml of liquid. Now, not even my old mains neb does it that slowly, its supposed to take somewhere from 10-15 minutes (as is supposedly the benefit of ultra sonic nebulisation) so as you can imagine, I was somewhat concerned about this. So. me being me, I turned detective (probably due to the influence of Capcom's Ace Attorney series (I recently discovered them thanks to Jace's influence) where you have to find out the truth as to what happened in the case you're investigating, fantastic games, but I digress) and set to examining the usually very reliable machine. My first instinct was the mesh (even though that had degraded considerably over the 18 months I was using it) but even after a replacement, I found that the nebulisation rate still wasn't right.

I then took the medication cup off (I must have boiled that thing 3-4 times over the time I was trying to work it out) and noticed that the contact points on the main unit and the medication chamber looked a bit different to what I remembered. If you have one yourself, you will know that underneath there are 2 small metal contact pins on both parts. These allow the sonic frequency to push the medication so you can imagine the problem you can have when moisture seeps under the medicine chamber and some light rust starts to form.

Now here is the really clever part (something I found out from years of watching my dad work on his most prized possession, his beloved motorbike). People don't always know that rust can be removed from some metals with WD40 (it has a rather peculiar smell, but the strange thing is that it brings back memories of classic bike shows and some of the best parts of my early years) . Applied with a cotton bud and wiped away, soon that rust was a thing of the past. As soon as it was gone it was exactly like how my nebuliser USED to be, when I first brought it 3 years ago.

I hope this tip can help someone else, as it has already helped some people and to me, there is no greater feeling than knowing that something I have done helps another.

Loves
Wendy xx

Monday, 22 April 2013

It's All Good...

Since cleaning the metal contact pins on my nebuliser, it's almost like having my old, reliable friend back. It's only when something like that starts to play up that you really notice just how much you need that piece of equipment and how much of a part of your life it really is. This piece of machinery has been a valuable lifeline ever since that day that I brought it from Lloyd's Pharmacy. I remember well what the alternative was, carrying around one of my other driving machines (a heavy piece of equipment which could run on a battery, which even then it didn't hold much of a charge and would only be able to do about 2.5ml of solution at a time and was very noisy, for someone who doesn't like to draw attention to themselves, it was counter productive). I had been shown this thing by Penny who showed me the biggest advantage of it being how quiet it is. Since then, my Omron Microair has never been too far away from my reach. I have used it on buses, in cafes and even on trains or lying in bed or on the sofa.

It is almost as vital to my life as my scooter or my other medications and things to help me to live as well as possible. There are days when I find it hard to get out of bed because walking from one room to the next is just a recipe for a spell of heavy wheezing and a barking cough that can rattle the windows. Sometimes, I can be alright with something like a light spritz of perfume or a passing smoker, other times these can be a huge trigger and it takes time to settle things back down. I think it's the variable nature of my condition that really gets us off guard. I'm hoping that with the change of seasons, things will be a bit easier and I will be able to enjoy the better weather and the golden summer days.

I'd be lying if I said I was where I wanted to be at the age of 25, but I do think that as a result, I have been able to connect with people who I have become very fond of. I have a stable relationship which has now blissfully lasted for over a year, Jace doesn't mind my physical or mental problems, in fact they're just a part of me that we all just accept. If I want to sleep all day, Becky and Jace know the best thing to do is leave me to it and if I am really struggling, then they know what the best things to do are. We are a team and if anything, what ever gets thrown at us only serves to make our bonds stronger and brings us all closer. I only wish I had met them both sooner and maybe some of the less than pleasant aspects of life could have been avoided, but perhaps this only stands to test my belief. Everything happens for a reason.

Gatsby and Edward are settling in to their new home well and they are already friendly with all the other guinea pigs. Kadaj is slowly losing his ASBO reputation (I remember when we first crossed paths and his aggression, especially towards the other guinea pigs) but now he really is a reformed character. I caught this snap of him a few days ago when he was happily vegging out in the hay while Gatsby was playing in their little box house. The way he looked up when he saw I had my camera out and was looking to get a picture of this adorable little creature. He is a mummy's boy, completely, and hes become a rather chunky boy too. I am glad to see how he's thriving, a far cry from that skinny, terrified little boy who came to live with Gizmo. It's still raw to have lost Gizzy as well as Zell in less than 12 weeks of each other. We didn't see either death coming, Zell died as a result of a freak accident because he was spooked by the people upstairs being so loud. We both grieved hard for that baby. The house seems so quiet without him here. Gizmo's death was one of the hardest as he was only 2 years old and no one saw it coming, he was fine one moment, on his back having a stroke the next. Kadaj felt it the most I think as Gizmo was his cagemate and best friend. You never really saw one without the other, but hes really taken Gatsby under his wing and they are getting on well together. Tenzou is still cautious of Edward, but he and Kibou have really gotten close. So I guess it isn't all bad.


I guess here would be a good note to finish on, knowing that everything is just wonderfully happy and we are ready to face the next set of challenges with grace, dignity and courage. The world can bring it on and we'll just carry on as normal and stop anything from going wrong.

Loves
Wendy xx

Sunday, 21 April 2013

Making it Crystal Clear...

There really is nothing like a good night's sleep to really clear your head and get you ready for the next challenge in life. It's in that quiet and calm realm that we can reflect on days gone by, make sense of the past and things that happened as well as optimism for a future that we have to look forward to. Every so often when I sleep, I have these visions of the future. Some of them are daunting, but this time, it was magical. Becky, Jace and I living in a small, sweet little flat in a nice area, days spent either gaming together or talking about everything and nothing, long walks (or in my case rumbles) through nice places and golden summer evenings. In this special place one thing that I really noticed was how happy we all were.

The best part of what is to come is that when we move, we won't have to worry about the new "bedroom tax" or the loss of benefits that can happen in some situations. We are pretty much secure in our situation and, although we don't live like queens, we do alright. Bills are paid, we have important things like gas and electric readily available, and everything else we need and some of the things we like. It is wonderful here and with the right support we have a nice life. I do think that when we do move, I am going to miss the community around here. The wonderful people around and, particularly, all of the adorable and sweet kids who love to come and play with the guinea pigs (and they love the extra hugs and attention as well as the chance to snack on fresh grass and dandelions), but sometimes change is good.

I'm preparing myself for the next week ahead. Nothing too taxing is coming up, but there is a certain anxiety of mine that is starting to worry me the closer to the appointment I get. I have a dental appointment and a slight phobia of the dentist. I think it stems back to my childhood and when I was losing my baby teeth, my brother had this love of pulling them out one by one as soon as they began to wobble. I remember clearly the pain of when he used to grab them with a pair of our dad's pliers and just suddenly rip them out. I also remember how much that used to bleed and it led me to not like the idea of someone sticking their hands in my mouth. I had avoided it for about 3 years until recently, my wisdom teeth started to really cause me bother. One of my bottom teeth has been pushed right back behind the others, as a result it wound up being broken and it has been so painful (I had to get a dental first aid kit and put in a temporary filling to just hold it together) and I think we should start considering the idea of getting rid of those pesky wisdom teeth once and for all.

I also found something else about myself. I have developed an allergy to rats, and dust and hayfever have set in, bloating my cheeks a little and bringing me out in these weird pink splotches, not a pretty sight at the best of times but sadly I can't chose what and when I am allergic to things and sometimes you have to lead with your head instead of your heart, and sometimes you have to do whats best for your health rather than worry about making everyone else happy.

On a different note, I noticed that it's THAT time of the year again. April/May seems to be the time of year that a certain someone tries his hardest to try and worm his way in to my life through a (somewhat predictable) routine of mudslinging on his own blogs (maybe that's the most interesting thing he has in his life, if so then that is so sad), then the stalking usually starts (there is a huge difference between just KNOWING where someone lives and ensuring that you're always there), then there'll be a knock on the door and a rather transparent attempt to be kind, friendly and humble until it's made quite clear that there is as much chance of lemonade falling from the sky than there is in me letting this individual back in my life. I mean, after 2 years now, this is really starting to get sad. Well, I have been working with the local police, gathering evidence and if things do indeed go that far again then there will be a criminal conviction brought against this person as well as a restraining order, not something that someone who "wants" to be a teacher would want on their criminal record. I hope that in posting this early on, then maybe this individual will get a grip and get it in to their head that I am NOT interested in anything they have to say (I mean, after 1 relationship, tell me just how well you KNOW women? Because you honestly have NO idea about me, Becky or any other woman you have ever come in to contact with in your rather sorry excuse for an existence) then maybe we can save time and not have to see this rather pathetic circus ever again.

I really hope that this time the point is made clear.

Loves
Wendy xx

Saturday, 20 April 2013

OooooooooooooooohLaaaaaaaaaaaaaaaaaaa!!!!!!!

I've always been a bit of a softie when it comes to things that evoke a sense of nostalgia. Maybe its the warm fuzzy glow you feel when you remember good times from the years past or the people who you feel fondly towards and you remember the times you had together. Some things really do stay with you and you never forget them, sometimes that's a kind of magic in itself. I have always lived my life on the belief that you meet the people who shape you as a person for a really deep reason and whether it was a good or a bad time in your life, all that kind of melts away.

I think I was about 18 or so when I first heard Jeff Wayne's Musical Version of "The War of the Worlds", and I remember that rather drizzly afternoon all too clearly. I was playing the Sims 2 while my boyfriend at the time (who was my first real boyfriend, we were together from when I was 16 till just before I turned 21) Mike, he was playing a game on the PS2 and he found his mother's (who practically raised me from when I was 16 and changing from a teenager to a full grown woman, I am very fond of Shirl, Mike, Richard and Kirsty to this day and still in a way see them as family) cassette copy of the work in his wardrobe and he was so excited as this meant so much to him as it had formed a vast part of his childhood. I was honoured when he played it for me and I loved it, from the first song, I was wrapped deeply in this cocoon of a deep story of Victorian London being attacked by Martians with the intent on destroying our civilisation and taking over Earth. I never wanted to stop listening and was saddened when the music came to an end.

That Christmas when we all gathered in the living room to watch a DVD of the stage show, we were all glued to the screen and when the giant fighting machine descended on the stage, I remember how I gripped Mike's hand in shock and awe. Right away I ripped the music on to my then new laptop (this was Behemoth, I loved that computer) and we were soon in HMV to get our own copy of the DVD of the stage show. I must have watched it so many times, heck I remember one of those days when we all huddled around the Gallery in the college TV studio and watched it from my computer. We were all mesmerised by it and we had several of these impromptu screenings that half term, even the tutors would come in and watch with us. It became a kind of thing for a group of us and occassionally we would break out singing portions of the music.

After a few years, I kind of forgot about the music and the way it drew you in to this scary yet fascinating place as things in my life did start going sour. I'd moved through relationships which broke down for one reason or another and it wasn't until recently when I was pottering around the flat, I started humming the melody for "Forever Autumn". Then when my friend Ant told us about the "New Generation" recording, I was right on my scooter to obtain a copy. As I listened, I felt this amazing feeling of nostalgia and I downloaded the original without delay. Both Becky and I were brought in to
that world once more.

All the more incredible was one Saturday, I had been so unwell that I was unable to go out, better suited to my bed, and Becky came home from her usual wander around with a couple of special presents, a copy of Rae Earl's "My Mad Fat Teenage Diary" (I'd watched the TV adaptation, I really liked it) and a CD copy of the "War of the Worlds" from 1978. I think I was so touched by her action that I was smiling for the next month or so. I feel so happy whenever I put it on the big CD player in the living room and I feel that warm fuzzy feeling again. Becky is an amazing friend, not just for her kind gestures, but because she came all the way from one life to another just to take care of me. She became my friend, knowing about the flaws that so many others abandoned me or mocked me over without any judgement or intention to use me for material gain. We are like sisters, despite our different family backgrounds, sometimes we can't work out where one of us begins and the other starts.

Today she really found something amazing and I can't believe her luck and her kindness. We were nosing around the charity shops (laugh if you will, but we occasionally find some gems in them) and she found an original 1978 Vinyl copy. For £4 no less as well, and she got me this amazing gift. It was when we got home and actually looked the set over, we found out how perfect it was in both condition and as part of the growing collection. It inspired me to listen to the CD of it this evening and I find myself drawn back in to that story and almost wanted to check outside the window for the Fighting Machine! So I'm a very happy bunny this evening needless to say and I have Becky to thank for that. I love her, she is awesome!!

Loves
Wendy xx



Thursday, 18 April 2013

New Piggies!

There are fewer facts in life than the limitations of what can be achieved. It's even harder when you try your best to save a life and you have the cold harsh reality of the futility of your efforts. Sometimes you just have to take comfort that it wasn't to be and that no matter how hard you would have tried, it would have always ended the same way. We knew that we were taking a gamble when Sparda suddenly dropped and passed away (we have NO idea how or why, but we suspect it could have been something to do with having the babies so young) leaving her remaining kitten without a mum.

We tried our hardest to rear Lucky and we almost succeeded, another few days and he would have been ready to wean on to solids. We'd got in to the routine of feeding, toileting and then leaving him in his nice warm place to wriggle himself in to comfort and watching him closely as he became less of our pet's child, but our own. The next day, we lost his father Dante as well which was a crushing blow for both of us, within the hour, sadly, Lucky went to be with his mum, dad and uncle Virgil and we were beside ourselves thinking about how much we wanted to save that poor little thing. I guess we were both devastated but afterwards, in a reflection, we thought that maybe this was for the best and it was a stark reminder that we humans aren't made to rear small children like that. He was so small and delicate, not a baby we could have raised ourselves in all reality. We at least managed to make his last day or so comfortable and he knew we loved him so much, but I then imagined that he would have met back up with his mum, his dad and his siblings and that made me feel a lot better about it all.

As for us, well we have adopted some new guinea pigs. Becky found them at Pets at Home and they needed someone to love them and take good care of them. Kadaj had been feeling a little lonely after a stroke took his cage mate, Gizzy, from us a month ago and well we had to pair him up with someone else as he was starting to act rather unlike they feisty little monkey we all know and love. The new pigs, one is a dark coloured Abyssian who Becky has named Gatsby, hes a little sweetie and loves to cuddle (and with all that fluff, he is like cuddling a small feather) whereas his brother who I have named Edward (after Edward Elric) is a tan coloured satin (he looks a bit like a smooth version of Gizmo) who is a little bit mischievous, but has discovered a love of pulling clothes and piercings (not unlike a certain black and white pig whose pawprints are still in my heart).

I guess that since Becky brought the two little monsters home, we have been so busy that we haven't had time to be too sad. It's funny when we look at them compared to the others, they are absolutely tiny and we have found out that Gatsby is quite the chatterbox. Kadaj hasn't been too bothered by his new charge and tends to let him snuggle in to him. In time we are going to watch as they grow and become all the more boisterous and we will always be there to give them plenty of love and affection. They don't mind their older cagemates luckily and they are settling in to our home very well.

I however do feel a lot further in the cause of beating this infection that has made me miserable for almost 6 months now. The Ciprofloxacin seemed to really take it back a bit and after 10 days of that I do feel a lot better and a lot more like myself again. I am hoping now that I can keep up with the progress and hopefully not have too many more hospital admissions this year, but the realist in me says that that would be probably asking too much of my body, so we're taking it as it comes again.

Loves
Wendy xx

Thursday, 11 April 2013

The Sound of Progress...

I always tried making sense of life as it is and living it like there may not be a tomorrow to fall back on, no more second chances to do the things that you always want to do and live free and happy. I guess its easier to reflect on things when you face a death sentence or a long term illness. I try to make it so that my illness doesn't feel like a prison, but more a part of my life which I just make do with. Don't get me wrong, I am in no way ready to throw in the towel and give up on life but I am letting myself live with no regrets. No more lamenting on the past.

The past is exactly that. The past.

I know it is the things we experience that shapes us and the way we see the world, but it can also be the biggest and heaviest anchor we can bear. I'm finished with talking about how bad the past was, about some of the things I've been through and focus on the most important part. In every one of the bad times, it all ends the same way, I manage to pull myself out of the downer. I move on with my life and I find my dreams my own way. I really am one of those people who can never be kept down, no matter how much of the immature bullshit or playground politics (seems there are a lot of people who still think they should be in Primary School getting gold stars, but they aren't going to bother me for one simple reason, I refuse to let them) or anything else.

A lot of being a victim is submitting and ALLOWING other people to make us miserable or in control of our lives. Often this comes from people who are so scared of making their own choices and falling in to a comfort zone of letting someone make you feel that way. For too long I allowed people, be them from school, home or anywhere else, to take control of my life and make it miserable, painful and it nearly drove me on several occasions to do things that now I look back on and think "Wow, how unhappy could I really have been?". Most the time it was because I was too scared to stand up and fight back or because somewhere in my mind, I thought that I was a bad person who deserved to be punished. But there is always people out there who are more than willing or able to take advantage of just that and not care at all about what they're doing to others, just so long as their greed is fulfilled.

I'm making a complete effort to move forward in life and I think that if we do get the direct transfer, I will be one step closer to achieving my goals and putting yet more distance between myself and any bad memories that I may have here. I have had some wonderful times in this flat and I love the people around, but there are certain things and people I want to set a clear distance from. A big part of moving on with life is closing the doors, no more thoughts of it, no more regrets and no matter how hard someone tries, never bringing it all back up again. I have nothing to say now about the past, and it is certain that I will never have anything more to say on the whole thing again.

My blog was started back when I was in a dark place and when I look back on the early entries, I really feel a sense of lament and sadness that I allowed myself to get to that stage, but I am so proud of myself for getting back to who I was before all of it. I was looking through some old photos of me, particularly one from when I first moved to live in my own place in Redditch. I was 20 years old and I had embarked on a journey that was going to test me physically, mentally and every other way that one can be tested. Even after losing myself and having to pick myself up and start again, I am actually closer to that girl and its an achievement. Yes my face is probably a little plumper than it was, but trust me, there is a reason why there were no photos of between 22-23 that I would want to show as I really looked atrocious as the pred and Olanzapine had really bloated me and meant that I no longer looked like me. I was actually really sad as I am actually quite proud of my looks (I mean, it's part of being a girl to be proud of that kind of thing and saddened when you go from looking one way to another not so pleasant way) and I think that fueled my depression, so being able to pull that all together again has been a great boost to my confidence.

I would also like to briefly mention how our little baby is doing. In a way, he isn't just Dante and Sparda's baby, his is both Becky's and mine. We think hes going to have his mother's colouring and his father's fur type. I hope that he will have a nice mix of their personalities, although with Sparda, we have to be careful when we handle her as she sometimes doesn't feel like it and will shout at us. It is a shame that his siblings sadly didn't make it, but we are planning for another litter, hopefully now she isn't completely new to the whole thing she will be a lot more prepared and ready. And when Lucky reaches 5 weeks, he will be living in with Daddy and any brothers he subsequently has and Sparda will be with her daughters. The best part of that is that the ones who are born with us will live our their lives as a part of our family.

Loves
Wendy xx

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