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 26 February 2012

Grace and Honesty

Right, this has to be said now because I am sick to the back teeth of the playground politics and immaturity that has been thrown around recently, particularly from one person. Now I am reaching out to that person and saying to them that enough is enough. We don't have to like each other, but that doesn't mean that we have to relentlessly sling mud at each other over the internet. This blog isn't called "What my Ex did next". And it isn't about immaturity and mudslinging.

I started this blog back then to document the daily events of my life, my struggles with long term conditions and how I overcome each obstacle that tries to stand in my way. This includes the highs and the lows and from a lot of outsider's perspectives as well as my own, that did include incidents with this person when we were cohabiting. I never once proclaim myself as innocent and I know that when pushed I can be a nasty piece of work, but at the end of the day, I chose to move on with my life once that relationship ended. I have moved on and taken a lot of the mudslinging with grace and honesty and I will continue to do so if the need arises.

I hold my head up high because I have left the past where it belongs. Dwelling on the past does no one any good and becoming bitter and twisted will make it impossible for your own goals to be accomplished. So I reach out to that person for a ceasefire on the mudslinging, to leave each other alone and stop this immaturity and move on with our own lives.

Thank you

Playtime With An Old Friend...

When it was first released back in the 90's (I think it was possibly either 97 or 98, I am not too sure) I admit the Metal Gear Solid game didn't appeal to me, maybe it was my brother's constant prattle about it that made me think "Yeah, I can take or leave that" but as I grew older and less of a child, I started to get in to the idea of Metal Gear Solid. I remember watching it played through many times and found the ideas behind it pretty interesting. I loved how you had to sneak around the "Shadow Moses" facility and the story was somewhat addictive. I did eventually start playing it myself and actually found it an enjoyable game.

So you can imagine my sheer delight when I was walking through Tescos that day and discovered that the Metal Gear Solid HD Collection was being released on PS3 and, my personal favourite, X Box 360. After a few weeks of not being able to find a copy for love nor money, I ordered it online and after some snow delays it finally arrived this morning, ready to be played and enjoyed. It was fantastic to see Snake in HD and watch the well researched story unfold in front of my eyes. It brought a tear to my eye as it was something that I have enjoyed for many MANY years and to see it come to life like new was in itself incredible.

OK so I still managed to get all the guards on me and I only just managed to catch a snake to nom, but I did enjoy myself running around the abandoned factory. The funniest thing I probably did (and yes it was something immature) was zoom right in to Snake's crotch for a couple of minutes. I don't know why I did it or why I was laughing my head off because of it. There was something amusing about it but in that groggy and less than well frame of mind, I was probably going to giggle my head off at anything!

Last night was eventful in it's own way as well. I hadn't been feeling so good during the day and my asthma had been troublesome. I had gotten to the point of hourly nebs and the weren't helping as much as they should have. I was starting to feel a bit tired and then decided that I had had enough for one day so decided that it was time to get some help (with some persuasion from some friends) and with my SPo2 dwindling to just 93% the paramedics agreed that I'd done the right thing. I spent around about 2 hours on constant o2 until I was more settled, less wheezy and we could find the root of the problem.

The first step was bloods and IV access. That wasn't too simple in it's self. My veins are a bit twitchy as they are, but when the first one shut down instantly, I think we kind of knew this was going to take a while. We tried another one and were successful. An ABG was needed too. I hate ABGs at the best of times. They hurt. A lot. Unless you have had one, you can't possible know what they feel like. A needle in your wrist, digging inbetween the bones to find an artery to take a sample of blood. It isn't easy to do when the patient isn't tachycardic. When my heartrate was over 150, this makes the job a LOT harder. As a result, I ended up having 2 attempts and a hematoma forming on my wrist at the instant. This wasn't as big as it got, but at the time when it reached it's biggest, I really couldn't hold the camera steady.

I did amuse myself for a while however by listening to my Ipod and using the plush doll (this time it was Itachi, last time "Little" Sasu came with me) I took with me for some comfort and making him dance along, it made me smile and then when I was sleepier, I cuddled up to him and rested for a while. After the oxygen, nebs and pred had worked their magic, and I was finally settled right down, I was absolutely exhausted. It's a strange feeling, but when I struggle through most of the day like that, I don't feel tired because of the adrenaline pumping through, but when it's calmed down. I feel so tired that I just want to hit the deck and sleep for hours, but by the time I got home, I was a bit pumped up to sleep. I didn't actually get to bed until about midnight but didn't actually fall asleep until 2 AM. I don't know what was wrong, I was too hot one minute, too cold the next. Then I was aching in the strangest places and then I felt sick (probably because of all the Ventolin I'd had). My infection is still there and it's worse than we thought it was. I am now on 2 kinds of antibiotic, and it's going to take me a long while until I feel well and perky enough again to get back to normal. I guess that until then, the best thing I can do is getting plenty of rest, drink plenty and enjoy running around with Naked Snake.

I admit that the thing I really enjoy about Snake Eater is the authenticity! It's set in the 1960's around the time of the Cold War. The mission starts with the infiltration of the facility and the rescue of Solkalov, a director of the Soviet Weapon's development. I'll let you know how I get on with it!

Loves
Wendy xx

Thursday 23 February 2012

Wonderful Friends...

I am blessed to have such a tight-knit group of close friends who support me and help me when things are rough or when someone decides to try and have a pop at me for no reason at all. Last night was a huge proof of that and Tom and Becky really stepped up to the plate to support me and help me fight back against someone who is frankly not even worth the effort nor the time we spent telling this person to move on and stop trying to make me the bad guy. He needs to move on. I have done so. I am now rebuilding my life and things are better now than they have been in a long while.

With Tom, Becky, Penny and Nat on my side even the hardest things seem possible. On Tuesday Penny and I went out and we had a nice wander around Tesco. I needed a few things anyway, but I managed to replace my old hoover as the old one I had decided that it had had enough now and finally gave up on me. For something I only got as a temporary solution, it has served me very well over the last 2-3 years or so. My only gripes with it were the unwashable filter which just got more and more disgusting as time went on and the fact that the hose was so weak that it often split apart. This led to loss of suction and eventually the downfall of the vacuum cleaner and I was forever repairing it.

The new vacuum cleaner is a Samsung one and it has a washable filter and dust chamber. This to me is ideal because obviously I can wash it out and get rid of the dust and grossness. It's also a LOT more hygienic than the paper style filters which become rapidly clogged and eventually kick out more dust and dirt than they actually get up. To me that would be hazardous. I remember when desperation had led myself and an ex to loan a vacuum cleaner from his dad and it was so full of dust and dirt, every time it was used I was rushed in to hospital. Ever since then I had been looking out for something that was not only powerful, but hygienic.

I'm a stickler for clean, but I have to be. If my home isn't clean and tidy then I am at risk of asthma attacks because of the dust or worse, severe infections which take weeks to get to the end of. There are times where I do wonder whether I clean my home too much, but at the end of the day, my home is comfortable and because it's so clean and tidy, I know you can eat something here and not wind up spending the next week fighting off severe stomach problems. So I guess that is the difference really isn't it?

Loves
Wendy xx

Wednesday 22 February 2012

Recovery Process...

I actually forgot how rough the recovery period for my asthma can be. It's a long and painful process, not many people truly realise just how painful it can be. On a physiological level it can be as hard work as running a marathon, you're working muscles that aren't used to such strenuous use and the physical effort from trying to breathe. Once the muscles in your lungs have gone in to spasm and don't work properly, you are using muscles in your lower chest like your diaphragm, intercostals and the muscles in your neck are left working harder than they usually would. This in itself becomes very exhausting.

It does sometimes feel like your using the effort of 5 or 6 breaths just to take one in. Its really not nice. I have 55% of my lung function, due to damage from almost constant infection, inflammation and asthma issues. This has only really gotten to this point over the last  2-3 years. This could get worse as I get older. I have learned to accept this and I have made it my mission to go out and live my life to the fullest. Doing things I want to and indulging my hobbies and collections.I try and get out as much as possible, with help from my carers and friends. It's nice because not only does it help me get more active, but it helps to boost my self confidence as well.

I do enjoy a good potter around the town and some shopping. I do enjoy shops like Game and Lush, HMV and visiting CEX to buy games or DVDs. I also enjoy shopping on Amazon and have found some lovely things on there. Although I am still awaiting my latest purchase of the Metal Gear Solid HD Collections. I enjoyed the old MGS games and I have also read the novelisation of the first game, which came out when I was about 9 or 10. I did see the PSVita and after having a try on it, I have to say honestly that I wasn't that impressed. I love my PSP and always play on it, but this new thing just didn't appeal to me to be quite honest. I think the next thing I would like to save up for would be an IPad. I think an IPad would be useful for hospital admissions and would be easier to carry around than my laptop.

Oh and I want to get some of my planned tattoos done over the next year.

Loves
Wendy xx

Tuesday 21 February 2012

Feeling Delicate...

Last night was the first time in a while that I had visited the local A&E department. I was actually glad about having made it as long as I had between trips and I really felt proud of myself for coping with things as well as I have. Things seemed so different yet so similar. I couldn't work it out at the time, and even now it still somewhat boggles me. I saw the stony faced sister who had once told me that getting home "wasn't [her] problem" and that it was somehow my own doing that had led me to become stranded that night.

One of the most important things I had to learn from past experience was the importance of being prepared for not "if" it happens but "when". I admit now that I am not going in once, twice or even 3 times in a week. I'm glad about that and it is a definite improvement on how things were little more than 12 months ago. I don't even feel like that person any more. Instead I have bloomed and come out of my shell. My home looks more personal to me and I'm even handling things that used to trouble me before.

Since getting carers in to help, I have really been able to blossom again and prove to myself that I was more than the useless lump I had put myself down as. I enjoy pottering around the house during the day, enjoying the simple pleasures of my life, from the happy chattering of 5 beautiful guinea pigs, the clumsy escapades of a domesticated rat or just sitting down and watching something on the TV. It leads me to a relaxed and calm way of life and the ability to be laid back and happy in myself. A concept that I often wondered if I would ever rediscover. Turns out all I really needed to get through was the right help and support. This couldn't come from any partner. It had to come from a professional agency and group of people who are dedicated to helping people like me who have long term problems and need some help in coping.

I'm now coping a hell of a lot better.

Loves
Wendy xx

Monday 20 February 2012

Old Music...

There really is something so nostalgic yet wonderful about music that has come from more innocent times. My recent purchase of Simon and Garfunkel's "Sounds of Silence" album along with a couple of other albums of theirs reminded me so much of the music I was raised on my my parents. Growing up in the household I did (not the best surroundings for a young child by a long shot) I found a lot of comfort and solace in music. From a young child warbling along to Meatloaf songs to the times spent with my Dad listening to music like Don Maclean, Simon and Garfunkel as well as the Sex Pistols, the Clash and oddly enough Dire Straits. I think it was my introduction to this kind of music from such a young age that has been the biggest influence on me now.

One song that I used to enjoy listening to and listening as my Dad would explain the meanings of was a song called "American Pie" by Don Maclean (Madonna did a cover of it when I was about 10, but her version was less than palatable compared to the original). I remember this particular vinyl very vivdly as it was one my Dad kept well out of the way. It was the size of an LP, but you had to play it on the SP setting on the record player. The song was so long that it actually had half on one side and half on the other side so you had to flip it over halfway through the 10 minute song! When we used to listen to the record player, there was sometimes this wonderful sort of feeling where the 4 of us would sit together as an actual family and listen, often my brother and I would be sat with a dog each and my parents would be warm and affectionate towards each other. It was such a rarity, but whenever I listen to certain songs on my IPod, I get that feeling of warmth and calm and can't help but smile. It's no understatement to note that these family moments were a rarity at best so when they occurred they really carved their way in to my memory.

That particular song has been on my IPod and it gets played a lot. Especially whenever I think about Becky, it reminds me of her and her love of America. The song is about some really influential points in American history and it is so cleverly written. It has this sentimental feeling to it as it tells about the deaths of iconic people such as Marilyn Monroe, Buddy Holly and James Dean. I would love to find out what all the verses meant again as it really was a fantastic song.

I love clever songs from the 60s and 70s. Theres something so pure about them and the influence they have over modern culture and music of today. Theres still something of an allure towards it, even though now I am no longer a bonkers 7 year old, but an eccentric 24 year old.

Loves
Wendy xx 

Friday 10 February 2012

Friday...

Today is the end of the week and the beginning of some fantastic times with the people who mean the most to me. It's going to be a month of seeing close friends, and meeting someone who I have recently gotten close to. Becky coming up here today will be such a change of pace. She's moving in with me in the summer, but until then we take every chance to hang out and spend time together, in school and college holidays. She visits me and soon my home, which is usually quiet and subdued, is full of laughter, smiles and the sounds of two really happy young girls having a really good time. Late night games of truth or dare, funny little in jokes and quotes that come from nowhere and lazing around playing Dissidia together or Ultimate Ninja Storm 2.

It's going to be even more enjoyable on Wednesday when, as well as Becky meeting another person who means a lot to me, Tom, we're both getting a tattoo. I designed both of them from Masashi Kishimoto's design for the Heaven Curse Mark that is bestowed on Sasuke Uchiha. This mark is made up of three "Tomoe" which are also seen in the Sharingan eye. These represent "Man, Earth and Sky". In the anime, this mark is given as a sharing of ability or jutsu, also it is a mark that links people together as they were chosen by Orochimaru. Where as my Tomoe are going to be in the more traditional style, Becky's are going to be ever so slightly different, and her name is on the seal around her mark in the Cocoon Alphabet from Final Fantasy XIII. Hers has 6 short prongs symbolising protection from the beast inside her.

My mark however has 12 prongs which symbolise my very strong will and resistance to rise to people and their childishness. 6 of my prongs are going to be very long while the other 6 are shorter, my name has also been worked in to the design so that it is personalised to me. This mark on our shoulders will mark our bond and our deep connection with each other. As I designed them, I really tried to capture something of us both in the designs and really made them look unique, yet beautiful. Becky's design looks almost similar to the Earth Seal, but it has an element of flowing and free movement, perhaps symbolising fire and passionate personality.

This year I aim to get a fair few of my tattoos done and my sleeve is going to be at least worked on if not almost finished. I don't find the process painful as such, but I do find it cathartic as the designs usually mark a period in my life where I have triumphed over an obstacle. I do that a lot. There has never been a problem I have not been able to overcome, even if some of them were notably difficult or painful. I still had the strength and will to get there. I suppose in an abstract kind of way, that is my "Will of fire" that makes me want to be strong enough to overcome my barriers and protect those I care deeply for.

I'll be meeting Jace soon. I am really looking forward to this because after we've been talking for as long as we have, I feel there is a connection there and I am glad I joined that website and got talking to him. I really feel positive about this.

Loves
Wendy xx

Wednesday 8 February 2012

Keeping Models...

I think the only drawback to my exquisite model collection is the fact that twice a month I have to spend hours dusting each piece. But you know what, it's worth every second because unkept, they can look horrible. Now I will be one of the first to admit that some pieces of my rather extensive collection have cost upwards of £100 and some of them are worth more than what I paid for them, but you know something, they are really worth every penny whenever I go in to my living room and am greeted by the sight. My collecting has been one of the few things to keep me sane over the last few years and I enjoy every single piece I have.

It used to really annoy me whenever I used to go to an ex's dad's place. Said ex's dad had some truly magnificent and probably valuable models. OK so they were Star Trek and not to my personal tastes, but the model trains he had were lovely to look at. It's a huge shame that they were always thick with dust and years of neglect. Especially as some were hand painted and would have been beautiful things to have looked at. I often felt quite saddened by this, and I know my ex at the time felt the same way. So I taught him how to care for his own models and I really hope he keeps that up as he himself had some lovely pieces, even if they weren't my particular niche.

Since coming to live by myself, I have had the confidence to really work on my collections and how artfully said collections are arranged around the room. The shelves are all over my living room along with scattered artwork (my love of art has blossomed the most recently) and crib sheets for carers and visitors alike on how to handle it if I was to suddenly fall victim to my chronic breathing problems. A comfortable sofa (even though I still inexplicably sit on the floor) and the TV. The room is set out in a way that gives the feeling of light and space. Light and space are very important to me and always have been. I hate cluttered places and crowds. Clutter feels like I'm being cornered.

Although I am notoriously chaotic, I do have to have a certain level of clean. My flat is often untidy but never dirty. Nor does it smell unpleasant. Since having the services of "Helping Hands" coming in to my life, I have been a lot happier and able to cope. Theres 2 calls every week and I have a regular carer who I really get on with and is amazed with my drawing skills. It's nice to have someone who comes in and helps me, and knows when I need to get some rest (even if I am characteristicly stubborn about things) and I can trust to help with my housework.

I have started sleeping properly again which is a giant relief for me and those close to me. When I don't sleep properly I can become manic and after a few days either tearful, snappy or just plain unbalanced. (Randomly tweeting a word thats popped in to my head, or getting myself so drunk that I am unable to control myself). Since improving my meds a bit more I have had that chance to calm myself back down and even resume some kind of normality (which for me is anything but normal to another).

My life is so different these days and its different in such a positive way. I smile more. I have a connection with someone that is indescribable but its wonderful because he knows me in a way that no one else ever could. I have an adoptive little sister who I adore and dote on, Becky rocks. End of story! And I am becoming closer to someone who I have only known for 3 months, but when we message each other, I do end up smiling happily. Jace is a lovely person and I cannot wait to see him.

I'm glad to be meeting new people and I am glad to be still here. Life really should be cherished rather than hidden under the phrase "I would but I can't". I have recently stopped thinking about what I can't do, but more focusing on what I can do. What makes me happy, and now embracing life anew.

Loves
Wendy xx

Monday 6 February 2012

On Blogging...

I am so proud of the following my blog has had and the reaction of people who read regularly (or even some people who are new to my site). Its nice that my ramblings and thoughts really reach other people and for those who think I'm amazing or inspirational, it is the other way around. It is because of you, the people reading my blogs that I keep going and I keep on with the cathartic process. Blogging really has been that to me. It has been a place to put down my thoughts, who or what has been bugging me or even a way of talking that can make me feel better as it isn't playing on my mind constantly.

I live with my disorders every day and I understand them to a level that only few others can. Because of the amount that is known academically about Brittle Asthma and the fact that it only affects a number of people, its not a term many people have heard and its not a condition that many people understand. Heck, I live with it and there are days I just don't get what it's playing at. Some days its so hard to put in to words what I feel and why I feel that way. Some days I can write paragraphs about things.

With the combination of conditions that effect my physical and mental wellbeing, the feeling of struggling can become overwhelming. Those are the days when I just want to lie in bed all day, or cry because I feel a bit miserable, but there are other days when I just want to do as much as I can (albeit some days that isn't much but when I do things I do feel a sense of pride in myself) and I keep trying and trying to have the most normal life possible. Although this isn't always possible. Since having carers, things have been so much easier and I'm not pushing myself to the extremes and making myself unwell just by doing standard household chores.

I don't have millions of thoughts and dreams for the future. To be honest, I often find myself planning no further than a few days at a time. Live each day as it comes because yes I know it could be the last time, but you know something, if that happens then that happens. I would at least like to have gone out with no regrets, no time wasted on stupid grudges, if I don't like someone, I don't have them around, simple as that.

Loves
Wendy xx

Saturday 4 February 2012

Snow and an Unhappy Chest...

It's snowing here, and although I love looking at and taking pictures of it, my chest has decided that it isn't as enthusiastic. But then again my chest and I could never be accused of seeing eye to eye at the best of times. I had planned to go and grab a loaf of bread and some snacks from the local shop, but decided that perhaps that would be foolhardy. It's far too cold right now and I really wouldn't want to have to phone Becky with a "Sorry, I've been admitted again..." as we have been looking forward to next weekend for a while now.

I would have loved to have gotten out in the snow and in to the woods for some cosplay photos but I think for now that is going to have to wait. Not unless I want what seems to be just a cough and a cold to get worse. I'm thinking my best bet would be to stay in right now. Besides its warm in here and theres plenty of things that need doing around the house. And of course 5 lovely guinea pigs and a rat to keep me company.

The younger guinea pigs are starting to settle in nicely. Tenzou is starting to come out of his shelf and is a right little sweetie. He loves to explore the bed and burrow in to my duvet. He had been bitten by either Gaara or Zell (more than likely Zell actually as he is the more boisterous one) and has a little mark on his ear, he let me clean it without fuss and accepted a piece of Broccoli as a reward. I did see if I could house Tenzou in with Gizmo and Kadaj again, but after about 10 minutes (a record with Kadaj really) he was all fluffed up and making all kind of angry noises so I had to take Tenzou away before Kadaj turned psychotic on me. Not the first time he's gone ape-shit over other guineas. I still have the scar from when I separated him and Hope, and Hope being blind managed to latch himself on to my finger leaving a deep wound that nearly needed stitches.

I brought them all some toys this week as well. Kadaj now likes to gnaw the chain on his gnaw garland while Tenzou has taken to playing "nudgeball" with his rattle-ball. It's so cute to watch this little black creature nudge this ball around the cage then popcorn with sheer pleasure from the sound it makes. Kadaj and Gizmo do have a rattle-ball and Gizmo likes to throw it around which is funny to watch. It does one's morale good to see animals looking happy and healthy. Makes me feel like I'm looking after them correctly and that they are growing to be happy, active pets.

I finally managed to open the living room blind for a while today. Usually I feel too exposed with it open, this was part of my PTSD and I was becoming scared and paranoid about other people, and particularly the threat of others. It's been 2 days on the stronger dose of Seroquel and I am starting to finally calm down. Not helped obviously when I get so tired that I can't keep my eyes open, I tend to become easily upset and stressed when that happens. Care needs to be taken in future to prevent this from occurring.

I am also actually looking forward to starting art therapy, the waiting is long, but it will be a good way of working through everything thats bothering me and a good step towards healing and becoming the person I know I can be. I guess I need to just follow Becky's advice and rather than take everything on all at once, just break it down and do it bit by bit. Little by little. Step by step.

I'll phone in a verdict!

Loves
Wendy xx

Friday 3 February 2012

Adding To The List...

After my long awaited appointment at the local psychiatric unit (yes, I see a shrink and I don't actually give a toss about anyone who would make me feel inferior as a result of it) I finally got that chance to talk to someone and feel like I was getting somewhere. My last appointment went a bit... well, wrong. I had gotten to the hospital, checked in and before I knew, I was struggling to breathe and my chest felt as though I was being sat on by a whole herd of elephants! It took a while to calm down and I was worried that maybe I had been crossed off the list and had decided maybe I would have to be re-referred. As soon as that thought crossed my mind a letter had appeared on the mat and I was asked to go to my appointment.

Doctors appointments are usually a thing that stresses me out. I admit. I got to the unit and after nearly an hour's wait, I got to speak to a nice doctor and we talked in depth. About EVERYTHING. My life now. Patches of my past. My past relationshops and the result of the most stressful time of my life. I had had bad thoughts again recently and I felt more frightened by it all. Nightmares and other things plagued me and I felt so bad about things. So on top of my OCD, Bipolar, Schizophrenia and Anxiety issues, I have now been diagnosed as suffering with Post Traumatic Stress Disorder due to the stresses of the last few years. My illness and the lacking control of my symptoms.

I think I took it OK and have started the new level of treatment with antipsychotics, anti-depressants and the new idea to try a new thing, art therapy. I have never done art therapy before so this could be interesting.

Loves
Wendy xx

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