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.

Friday, 28 October 2011

From the Ashes...

Have you ever had one of those days where everything reminds you of how precious life is. I woke up on Wednesday just itching to just start the day and embrace it. The weather was less wet than it had been in a while, heck even my asthma was behaving a little better than usual. I went out with Tom and had fun walking around, and some things I brought were focused on making me look as good as possible. For so long I hadn't even bothered to brush out my hair or get dressed and it was not a good place to be.

I then heard some tragic news and it shook me. Rachael Wakefield, a 23 year old girl from Manchester lost her fight for her life with a rare and devastating lung disease. Rachael insipired so many people to sign the organ donor register as well as became the voice of many others who struggled to get on the transplant list. Her strength and courage throughout her long illness goes to remind other people with illnesses and disabilities that it doesn't mean the end and that you can still do something positive. Rachael was the person who told me to keep pushing to get a proper diagnosis as well as inviting me in to a group of people who were in a similar situation with lung problems. She is now at peace and even though we are all sad that we had to say goodbye, we know she will always be with us in spirit and in each one of us as we fight to achieve our goals.

Young people with illness should embrace life, we are not just a load of statistics or symptoms, we are strong and inspiring people in ourselves and by not embracing life and taking it by the horns, it is an insult to all those people who lost their lives. I honestly believe that.

Loves
Wendy xx

Sunday, 23 October 2011

Proud To Be...

Recent events and a lot of other things lately (something almost happened to one of my best friends and it shook me) and a few other things has made me think. Life is really fragile and when you live with an illness, it becomes even more so. This scares me in so many ways because it is never easy to face one's mortality, be it our own or another person and we tend to focus only on what may be or what "should" have been in our opinions. But we never really embrace what we have now. No one ever seems to just live in the moment.

Recently, that is kind of what I have been doing. I have been living in the moment and taking life by the scruff of the neck, doing everything I have "meant to" or "wanted to" and it has been a period of time where I haven't met with a HUGE amount of regret and heck, my moods have improved. I have been empowered by those who support me to get out, even if it means carrying enough equipment that I could be a paramedic or being slightly scared of the people around me.

A year ago, I could barely face being at home with 1 or 2 other people. I seldom went out and only did when I absolutely, positively had to. I missed a lot of college because my asthma was so out of control that I was embarrassed by it and terrified that going to college would result in a trip in an ambulance, but I had become this terrified and really nervous individual who was faced with criticisms because of her scars and her unique way of doing things. I was scared of people. I was scared of my then partner (but there were many complex reasons behind that, yet now I wonder what I was afraid of when I see him, but thats another story). And I was scared of myself. By that point, I just couldn't face another day and would scarcely get out of bed. What was the point?

What changed? Well, I grew up and got out of that situation and became so proactive in life and determined to change everything. I have wonderful people around me. I have courage to stand up and say "you know what, I have grown out of being a scared little girl, but it seems that a lot of people will never grow out of being jerks" and celebrate myself and my individuality. I like to wear gothic clothes, and long coats are just awesome. I have 2, a black trench and a black and red Akatsuki cloak. At the moment the cloak seems to be my favourite but thats because it just looks like it's popped out of the anime. As for the person who tried to destroy me, well that person is a petty creature who doesn't deserve my time, and what is the worst they're going to do? Write another blog about me that NO ONE is going to read.

So, what I propose now is for people to stop trying to be just like everyone else. Embrace life, be PROUD of everything YOU are. Stand up and say "Yeah, I am a freak, but I am MY freak" and essentially kick the asses of everyone who tells you you can't.

Loves
Wendy xx

Wednesday, 19 October 2011

Making Sense...

Being me has its disadvantages at times. I am a clumsy sod and I trip up on my own feet, all the time. I had a clumsy moment on my way back from Reigate. I know you are probably wondering, "What the hell was she doing in Reigate?". Well, I was there to see a friend, a kind of kindred spirit who I met by chance.

I'd been looking forward to meeting Becky all week. It was a long, but really rewarding trip. I guess, I can talk about that a bit to start. I got up at the insane hour of 6AM. I haven't actually been up at 6 since I was working at Stafford Hospital. That was about 3 or 4 years ago (you know its been a while when you actually have to spend about 2 minutes trying to work it out!!) and I remember when my mum would have to knock on my bedroom door and try and get me up. Oh I was a bugger! She would come in and pester me until I would finally crawl out of bed, ready for a 7AM 2mile bike ride from our home in Highfields to the hospital. We'd get there and be ready for work for an 7:30AM start. But I digress, I actually attempted this whole getting up early thing.

By 7AM I was at the station in Redditch to get on a train at half past. It got me to Birmingham New Street for about quarter past 8 and I was able to get some tea and something to eat. It's a fatal mistake to give yourself a full tummy when you could happily sleep. The hour and a half journey to London Euston was spent with my head on the table, completely ZONKED! I slept so soundly that the woman opposite me couldn't face having to wake me up as I was so peaceful (and probably snoring like a dragon with a cold!!).

Traveling in London is so much fun, the sights, the sounds, the smells. Theres just so many people and they're all so unique, I didn't feel like a freak at all. I asked for some advice on how to get from Euston to London Bridge (for my connection to Reigate) which was a little more tricky as the Northern Line wasn't running on the one side, so I had to get on the other side to Waterloo and on to the Jubilee Line to London Bridge. It was so unusual as I hadn't been on the Underground since I was a child. It was just so weird traveling around a city by train, being so used to small town life. I guess in some ways I am just a small town girl... (I know that was corny but it is true).

Anyway, I got to Reigate for 5 to 12. By then I'd been traveling nonstop for 4 hours. But when I met Becky at the other end and spent such a fun day exploring and enjoying being shown around her unique and wonderful world. Becky is really a treasure, so sweet and kind and I loved being in her town and the shenanigans with a certain security guard in a supermarket with fun-snaps! Oh, it was like being a teenager again!

The trip back was just as bonkers. And this is where I managed to have my clumsy moment, I was getting off the train and did something to my foot, by the time I got home, it was so swollen and painful and I couldn't put weight on it. It still hurts now, but I think the soft-tissue just needs to heal and it will be fine. I was happy on Sunday when Tom came to see me. Tom is like the Cloud to my Tifa, the hero who sweeps in and saves me when I feel alone or when it hurts he makes it easier. He really is the best thing that ever had happen to me. He's just kind and so wonderful.

For once my life just kind of feels like its coming together and its actually starting to make sense.

Loves
Wendy xx

Tuesday, 11 October 2011

Life Is...

Life is such a precious thing. However we all spend way too much time brooding about the past, what could have been, what might have been and what was. Its only been recently that I have been looking at what IS. It has helped to get some much needed clarity on things and life as a whole. Realising before it was too late that I push people away because I myself cannot face the uncertain nature of living with Brittle Asthma and what that entails. But the main thing I have to remember, to keep myself grounded is that the minute I give up and stop kicking, thats when I ought to stop taking the meds and lay down and die. And that is just not something I can think about doing, not now. Not anymore.

To hear that someone who I care about is dying and won't recover this time has brought me crashing down to earth and it has put a lot in to perspective. It is tragic that such a beautiful and strong young lady is in that situation and to know what her family knows now, I think its hard for anyone else to comprehend. But it is very sad. Very VERY sad to hear about Rachy and after everything shes been through. I spent some time alone with my thoughts, had a cry, and then thought about it. I then heard that Tor was having her transplant today and it felt bittersweet, almost as though one person was getting their chance while another fades away and that made it all feel even more real than I think I was expecting.

So I sat and I mulled it all over. Well to be honest it only strengthened my resolve further and it reminded me more that what I need to do now, I need to stick with. I need to do this and I need to get to where I need to be because if I didn't then what an insult to those who have lost their lives before the age of 25. There is nothing worse than a person who has so much to offer and so much to give, just giving up and forgetting to live the lives they were blessed with. There is nothing worse than wasted potential and it makes me feel physically sick.

I've been keeping a more personal handwritten diary again and its been as cathartic as usual to just write down whats bothering me or what I am thinking as well as giving me some kind of reference point as to how far I have really come over the last couple of years. I just want so badly to say that all my demons have been beaten, but that would be childish and wrong, but I am getting there, each day. Tom has helped me so much and I am always going to be grateful to have him in my life. There is no other man I would ever want and this is THE one.

I guess right now all we can do is focus on what we can and take even the small victories and smile.

Loves
Wendy xx

Saturday, 8 October 2011

And So It Begins...

Well the winter is well and truly descending upon us, the weather is cooler and my lungs, well they're really not happy about the cool weather and the influx of coughs, colds and flu viruses that have begun to make themselves very much at home. I love snow and I love how pretty it looks. Last years snow was absolutely breath taking (in more ways than one) and I did enjoy the icicles that we had for Christmas.

I guess the only thing that I don't like about winter is the fact that my lungs suffer more as a result. Over the last few years of constant infections, asthma attacks and a general lack of control of my condition (my asthma wasn't T1BA, but T2BA a few years back, but as time went on and I got older, it became more akin to T1BA and that was what it was officially diagnosed as) has left a lot of scar tissue that is very easy to irritate and doesn't seem to like me doing much more. Even getting dressed or having a bath, or even cooking a meal for myself can seem like an Olympic event and I end up too tired to do anything else, and that can even mean that I choose to not eat than go through the hassle of cooking and then eating, both can leave me so tired I just want to sleep.

Its been productive though and I have been slowly getting my confidence back and I am starting to re-evaluate goals in my life and where I want to be, so that is at least something. Instead of leaving myself to wallow in self pity and become more miserable, I have been looking on what some would call the brighter side. I have a wonderful boyfriend who I love so much and when we're together it seems like there is nothing I can't achieve. Silly isn't it? But I have fallen very much in love and I haven't been this happy in so long, so fuck the past, that stays where it belongs, in my memories.

Hold on to the good, positive stuff and let the rest go to become obscure and non-existent. The past is heavy and it doesn't help anyone to carry it around like a treasured doll or other keepsake. If something made you miserable, well, as Edward Elric says "Keep walking, you have a good pair of legs. Get up and use them." and thats the kind of example I have been taking. I get up and try and do at least something every day, even if it is just washing up or eat a sandwich or just something small. Its worth doing because on those bad days, even small victories are victories nonetheless.

I plan now to just keep moving forward. I can't let myself be dragged down by negative perceptions and negative people.

Loves
Wendy xx

Wednesday, 5 October 2011

Poof!!

I had been trying to get this sorted for a while, but fate had other ideas, my old TV finally gave up the ghost and was crying to go to the great living room in the sky. It was a shame because I had had it for so long, maybe about 18 months to 2 years or so, I can't remember exactly when we got it, it was one of those things you seem to acquire over time and it did serve me well over the time.

In its place is a nice new TV which I got in a sale, but that isn't the main focus of the story. It is actually what lead me to the story in the first place. When you replace an appliance, it is only then when you actually go behind it and find out exactly whats under or behind it. You can't just plonk the new thing exactly where the old one sat, you have to rearrange EVERYTHING. When we moved here back in April, everything was really arranged haphazardly and things were just shoved in to a place where it would do for now. There was no feel of permanence or settling in. Things were just thrown in to place and we just kind of thought "That'll do" because it was in all honesty a stressful few days. We had to decorate and move in less than a week.

I finally plucked up to get behind the old TV stand and see what horrors (and I say this as honestly as possible) lurked in those corners. A tangle of cables which looked insane, I managed to sort and bind the cables and tie them down so that and have them out of the way. It was amazing really to see just how many wires and cables are actually there. I mean there were cables for everything from my Lifeline to my cable and internet, and the other screen I use for my PS2. I sometimes have both screens running, one to watch TV or DVDs or whatever I want on there, and the smaller one used for the Playstation where I can veg out and escape to a fantasy land. It also helps when Tom wants to play on his games on the X-box and I want a game on the PS2. It is quite companionable, even more so when we both play together on one game.

I actually felt as though I'd achieved something moving all that stuff out and wiping away the dust and cobwebs. Its great now because its fresher and the air of the room and how it feels is so much different in here. The TV that I actually vomited over on Boxing Day (THAT was horrible) and it made all the difference to change how the room felt. All the tension and frustration that had been centred around that TV and other furnishings from the YMCA just added to this feel of despair and depression that had been sweeping over me over the last few weeks.

I'm making seemingly small changes that make everything else feel different and better.

Loves
Wendy xx

Tuesday, 4 October 2011

It's Been A While...

Its been a good few weeks since my last blog. I guess I was just embarrassed about a few things that have been making me feel really bad about myself and I just didn't feel much like talking about any of it. Its been hard to get to grips with a lot of things, but I really didn't want to post for fear of being either judged or yelled at by various people. People are often quick to make judgements and criticize others for their less than perfect bodies and minds.

I am not perfect. I am flawed and I do have a LOT of unresolved issues in both my past and present, but I do work on them. I do get up every morning and try and keep a positive outlook, but there are days that this just doesn't happen and I feel my world coming down with a bang. I have often said this and I still believe that I am not the worst out there, nor am I the only disabled person now or ever. I do get up every morning feeling thankful for the fact that although things aren't easy,

I am STILL ALIVE.

I am STILL HERE.

I nearly gave up at the weekend. It has to be said. I was just so fed up with everything and wanted oblivion. I had began to write a text for my friends and family, telling them how I was feeling and in some ways saying goodbye and I'm sorry. I was saying that I was sorry for being so weak and just not able to carry on anymore. Then I stopped. I put the pills back and realised that this was a selfish act. Suicide is selfish and it never solves anything. Yes it meant that I wouldn't be suffering, but the price would be causing my friends and family, the people I love, to suffer and that would have been a lot worse. It's toying with not only my own, but other people's lives and its not fair. On anyone.

A lot of my problems began when I tried to stop taking the Seroquel (an atypical antipsychotic medication) after leaving Steve because I didn't want to think I'd need it anymore. Yes without him it is honest to say that I am not only happier, but finally able to get back on track. Maybe I thought that getting rid of a destructive force in my life would allow me to conquer my mental health once and for all. I didn't take in to account the scars which run both inside and out.

Inside my lungs is a LOT of scarring and some of the smaller airways have shut off completely. This means my lung function is only about 34%. I upset the scarring last weekend and had myself spitting blood for a few days as a result. All I had been doing is singing on Rockband and having some fun where suddenly, out of nowhere this black stuff started coming out when I was coughing. Black tarry clots of blood, and a visit to the doctor later and I found I'd made the scaring bleed slightly, which would settle down by itself. It was painful but it did settle down eventually.

So I guess thats all I've been doing just lately.

Loves
Wendy xx

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