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.
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.
Its been over a year now since my little guinea pig, Hope, passed away. Hope was a special little creature and like me, he had disabilities. He reminded me that even if things are a bit crap now, that life can still be lived in a way that is both meaningful and enjoyable. I think of him often and I miss the sounds he used to make everyday.
Even if there is part of me that feels sad for the loss of such a beloved pet, at such a young age (he barely got older than 6 months old), there is a part of me that is happy that he is no longer suffering and he doesn't have to deal with his seizures or the urge to hump everything that he saw (which was at times the funniest thing you could see. I know he watches over us and urges me to stay strong, and never give up on anything, along with Alphonse who has been gone for 18 months now, and my beautiful gentle giant, Patch who left us only 6 months ago. They all left me with holes which I struggled to fill, but I know that if they could see me now, they would be proud of my resolve and strength.
I guess recently things are getting less complicated and more simple, despite having to wade though a mountain of paperwork (the forms for my benefits are so irksome at the best of times) and a few other less than notable things, I am happy that everything is falling in to place, and despite everything, I have landed on my feet as usual (I swear I was a cat in a previous life). I've not really had anything worth getting annoyed over and thats great because I do so enjoy the calm and tranquility that my life seems to have found.
I'd been reading Jennifer Worth's series of books "The Midwife Trilogy". I had watched the BBC's adaptation of the books in the charming series "Call The Midwife" earlier this year... or was it late last year? As well as finding the DVDs of the series for a meager £5 in town. Re-watching it had made me want to re-read the book. My favourite character was Camilla Fortesque-Chumley-Browne, or Chummy for short. Chummy's character was one of a shy and awkward young lady who often felt out of place in her surroundings, having grown up in an opulent lifestyle, having to work in the London area of Poplar which, in the 1950s would have been impoverished (and I mean true poverty, people living in houses that hadn't got some of the essential things we take for granted, such as electricity, running water or even central heating and usually these homes would have been squalid and unhygienic, but were loved by the residents regardless) and as it was based before the recent invention of contraception, as soon as one baby had grown out of it's pram, another would soon be born to take it's place. Yet despite her unease, Chummy managed to find love in the arms of a policeman and she managed to shake the society and mercenary nature of the world that she was forced to live in.
I related to her quite a lot. Admittedly, I had not fallen from a height of wealth and royal connections to living in what would now be referred to as a slum, but I did go from being the daughter of a woman whose main interest was that she married "well" and managed to climb up the social standings to being my own, independent young woman who rents her own small flat (yes it is a post-war prefab) which does have it's positive and negative attributes. I personally love it in this small place and I have made it my own and made it special to me. The flooding earlier this week was probably due to the loose double glazed door in the back. A replacement and it will return to being water-tight once again (avoiding the problem of flooding once more). Other than a few other minor issues which the council were diligent in repairing for me, this place has become my own little slice of heaven. Even the garden, which had been something of a jungle is beginning to transform in to a place of pleasure and relaxation (hayfever permitting of course!).
The main thing is, both Becky and myself are content with how things are right now. Soon her boyfriend will be visiting us from Wyoming and Jace will be here for his first ever visit very soon and we're all really looking forward to it. It's funny, this relationship feels so different to the past ones, and it has a sparkle which actually feels better than my first relationship. I feel so lucky and whenever I see messages from Jace I smile, I cuddle my special pillow close and it reminds me that even when I feel like shit, that someone out there loves me no matter what. And no one, no matter how determined, can ever take that away from me. Even if they waited in the shadows for a lifetime, it is time wasted as they could have used that time, instead of a wasted effort to destroy that happiness I have found, finding their own life and their own happiness.
After the last week, I have been almost floating and have not been able to stop smiling like someone has injected me with sunshine. I am so incredibly happy and its not something that I thought I would ever find again. I have had relationships where the other person wasn't who he seemed, or relationships that left me a shell of my former self. Since my last relationship, I was left feeling so depressed and miserable that I had been so sure that I would never fall in love again.
I was wrong. So very wrong. The day after my birthday last year someone so special and wonderful came in to my life. He didn't turn it upside down, but he was there for me when I needed it. He listened when I was upset or in pain from my shattered elbow (and my shattered pride) and with Becky, he helped to rebuild me from that. I have two people in my life who are so important to me. And yes, I did meet them online (shock!) and contrary to what one person believes, I have been able to maintain a face to face relationships with them and other people in my life.
I can shout it out proudly. I am in love with someone who makes me feel so safe and loved. The people who hurt me are now little more than morose shadows which no longer burden me. One of my biggest mistakes was allowing my past to ruin my future and letting what other people do affect me. It would have been way too easy to run away and deny my feelings, but that would have hurt everyone. And frankly that is really not my style. I'm not afraid to admit that I am in love with someone and that person makes me feel like the luckiest lady in the world.
After Tuesday, I have never been so happy. I feel like I have been given a second chance and a chance to cut loose from the past. Its not like it didn't happen, but I learned from it and moved on. I learned a lot of lessons the hard way, I will admit, but it was learning the lessons in life that allowed me to grow up, mature and get stronger. And as one of my favourite songs says:
"I will not stray, I will trust this love and with it I will keep on living" - Kesenai Tsumi (Nana Kitade)
I never understood the meaning of those words until now and I love Jace deeply and with all of my heart. I also wish to thank Becky for the wonderful photo that she took of the two of us on Tuesday.
Well this morning, I was awakened from what was a rather odd, but funny dream about the strangest of things, to the soothing sound of rain falling outside. Now I was lying there, snuggling my special Sasuke pillow and Sephy as Becky ran in with the words "Wendy! I think theres going to be a storm!" I think the look I gave her must have been one that said "When I wake up properly, I am going to kill you!" Then I sat up and there was a roar and crash of thunder and Becky was watching it out of the kitchen window.
Now I don't really mind the storms too much, in fact I like how it freshens the air. What I wasn't too happy about was the fact that the back door to the flat is frankly shit and we wound up with water coming IN! Now that was an experience where we were sitting by the back door armed with towels and the conviction that this water was NOT going to come in and fry everything electronic. What was funny was the fact that we had to mop up once the rain had finished. Neither of us were best pleased about it, but we both mucked in and got the job done.
Luckily the most damage was a slightly wet carpet that has now dried and a rug that had to go in the shed until I can get it cleaned and sorted. Although the room does seem bigger without it! We may just fling it to be honest as it wasn't really in keeping with the rest of the room, which has a modern feel to it. I do prefer a simple approach to things, even if they soon become complicated later...
I guess things seem so much lighter these days, and I am glad of this.
After months of talking and trying our hardest to set up a date, yesterday I managed to get out to the North West coast, and to see my darling Jace. We were both so nervous that we were shaking but when we first met, that moment was just amazing and how I imagined it to be as we embraced and shared our first ever kiss. Now I have had the first kiss of a relationship a couple of times before, but I really felt something different this time, something magical and it was like I had been missing him my whole life.
Even though the weather was typically British and I had to buy new shoes (as well as a fiasco with my bag strap snapping, Becky very kindly helped me out with that) as the dolly shoes I was wearing were so uncomfortable that by the time we arrived in Blackpool, I was more comfortable walking around barefoot! The day was nothing short of amazing! We sat on the beach, watching the sea and the tide as it ebbed and flowed (there was something soothing about the sea and the sound it made as it lapped the shore) and for a while my romantic dreams had come true.
Ever since I was young, I had always dreamed about walking along the beach with the man I adored at my side. To finally get to do that was a dream come true. To find the missing piece that I was searching for was nothing short if a miracle. Jace gave me somewhere to belong, and I am thankful every day that I had happened upon the website Mai Otaku and met Jace. His kindness and patience with me and even my conditions didn't phase him. For the first time in a while, I didn't feel embarrassed to puff on my inhaler and heck I was even brave enough to wear something that I would have never had the guts to before, I wore a long blue dress, tied up as a halter neck at the top, and of course my favourite grey and black stripey cardigan!
We also tried our luck in the arcades. That was extremely enjoyable as we played games, laughed and Becky even managed to win herself a small white ghost from Pac-Man. Our little ghosty friend was a cute new companion for us! We also had some fun taking pictures with Becky's small black teddy bear, Jared. Jared is a cute little fellow and he has been on all kinds of trips and travels, I was only sad that my original bag had been way too small to fit my small and rather adorable plush doll, Sephy (yes I still have him and he still goes everywhere with us!).
The journey home was one thing I was not looking forward to. As soon as we had to say goodbye at the station, and of course lots of goodbye kisses, I felt that familiar ache that I had experienced the first time I had met someone and fallen for them. I was sad to say goodbye and I missed Jace as soon as he left, but with the promise of a visit soon (we have a date, but for privacy reasons, I am not going to publish it here) and a week to spend together.
I'm finally happy and I feel so safe and secure. I am Jace's girl and I will do everything I can to make sure that the past doesn't repeat itself ever again.
Today I went to see my doctor about the pains and weird lumps I'd found in my stomach. These things had been around for a while and had been causing me considerable pain, especially when it came to picking things up and putting them back down. The good news is that it isn't likely to be anything intestinal such as hernias or problems with my bowels. But the bad news is that it is likely to be something wrong with my uterus and coupled with the lack of periods for 3 months (not being with a man physically since October somewhat rules out the possibility of a pregnancy) and other symptoms, the doctor is suspicious of fibroids.
Fibroids are small, non-cancerous lumps in the uterus. Another possibility was a condition called Endometriosis. This is a build up of the lining of the womb in other parts of the body. The biggest issue that all of that can have is that there will be a high risk that I will never have my own child. I already kind of knew it when I was 16 and I had my PCOS diagnosed after a cyst had popped and made me very unwell as a result. I was told then and there that conception would be very difficult. When I was just a bit older, I was told I had several other irregularities with my body. Not something you would have wanted to hear as a 17 year old girl who had serious body issues and ended up starving herself to 7 stone and lying to everyone that she was at least 9 stone.
I suppose my feelings are a bit mixed right now. In some ways I think I am glad that I can't have children as, well, my asthma struggles to let me do simple tasks for myself on a bad day, imagine how I would cope with a screaming, pooing and dribbling (considering my rather strange phobia of other people's bodily fluids) baby. I can see for myself that this would be a bad thing for me at best. But then there is that natural side of me that feels a bit like a failure because I may not be able to bear a child and thats kind of something that bothers me a bit. Although admittedly I have always made peace with the idea of adopting or fostering so I guess thats a compromise.
I guess now the only thing we can do is wait and keep on top of things, keeping a diary of what my body is doing. I have scans soon to see whats going on, what we're going to do with it and all that comes with it. Its a wait and see game and I really just want it all over and done with. Sorry about such a negative post but I needed to get this off my mind or I think I would be troubled for a while.
Over the last few days, well probably about a week now, I have been looking at myself as a person. After so much over the last 3 or 4 years of stuff happening (some of it positive and other things, well not so) and finally managing to get my head around it. I would have lied if I said that I had come to terms with things like my illnesses or the vast amount of change in my life. Heck, some of the things that have come to pass still make me wonder about them, but knowing that I did the best I could considering them is what keeps me strong. Even if I wonder how things could change so fast in the first place.
Last night I had been thinking about a lot of things but one thing came to mind. Those days before I turned my back and left my home town of Stafford for good. I remember them quite fondly and how I had decided that rather than riding my bike to and from work, I walked in the June sun. Visiting places where I had met and enjoyed pleasured moments with friends and family. Stopping for a while and just remembering those carefree Saturdays with my friends or those days before work when I would stop off and shop. I knew then that my time there was over and it was time to move on, even though I really felt that overwhelming sense of fear which comes to any 20 year old when they decide to move out and start a new chapter in their life.
I remember the first day I got my new home, hanging out with Daimon and Mike, but I had decided that for the first night I wanted to be by myself to adjust to my new lifestyle. My first home was a small flat in a shared house, up 2 flights of stairs (this is before my asthma became what it is now, but it still had days where I sounded like shit). It may have been small and pokey, but at the time is was exactly what I needed.
I think after my relationships with my past boyfriends had fallen to pieces, I think I just retreated in to myself a lot and just neglected to understand myself or how I really felt about things. What with my declining health and lack of motivation I was going through, I think I had given up on myself and ever finding someone who would love me for me and take my health as a part of that. I am painfully aware of it myself and I hate the fact that it effects the people around me in the way that it does. Be it from watching me having an attack and that fear that will the next one be my last? Watching as doctors take me away and work on saving my life as I lie weak and helpless and unaware of what has happened.
Sometimes I do wonder if this was exactly how I wished my life had turned out, I would be lying if I had said it was, but if I am really and truly honest about it, I am grateful that despite everything that has happened, I am still here and I am still alive. And I aim to stay that way for a long time. That was a promise I said to Patch as I held him that one last time. I promised my gentle giant that I would never ever forget him, what he taught me and I would never give up on myself again. I remind myself of the promise everytime I sit by the spot where he lies and I sit in the garden and talk to him.
Here is where I promise myself that I will never let go of hope.
Lighter moods recently have been a breath of fresh air (excuse the turn of phrase). OK so my asthma has been a bit on the volatile side but at least morale has been improved. Without the shadow of who or what could happen, I have been so much more cheerful and have been seeing the lighter side of life.
My recent pleasures have been games such as Metal Gear Solid HD Collections (a make over of 2 classic games and a porting of a later and popular title) and the Disney and Final Fantasy crossover of Kingdom Hearts games, particularly the DS title "Kingdom Hearts: 358/2 Days" which tells the story of the members of Organization XIII, a group of "Nobodies", men and women born without hearts, and trying to get their own hearts and thus being made human. The main character being a young boy called Roxas (the "Nobody" form of the protagonist Sora) who appears within the organisation and its trying to figure out who or what he is.
My wandering around in the world of Metal Gear Solid was not without its humour (OK so I was essentially making fun of Raiden, a young Foxhound operative who hasn't got the coolness or style of Snake). One of the funniest things occurred when I was wandering around Big Shell and I happened upon a kitchen and dining area. Well I wanted to know how interactive the scenery was and found a wooden crate which had 3 watermelons. I couldn't resist really so I took out my gun and shot them to pieces and ended up wandering in to the dining room, firing the condiment bottles off the table with a shout of "No condiments for you!". I then decided to head up to the heliport and have a look around using a cardboard box as a disguise. It was Raiden's Halloween costume... he was a shipment!
The funnier thing is that I have been tempted to dig up a cardboard box from somewhere, stick it on my head and see how many others would get the joke!! Given half the chance I'd find one big enough, go in to town and find a place to lurk with this thing over me... and probably end up winding up half the security staff. I am proud to say that recently there have been some real sparks of the old me of two years ago (a crazy prankster who 9 times out of 10 ought to know better!) and I have to admit I am enjoying that crazy young lady and her mischievous side.
Its been nice as well to bring another in to something that was a small part of my childhood and part of a long standing joke between everyone I know. It was even funnier when I told the story of when I was at work waiting for my mum, who came in to the room to find me slumped with a box over my head and said "Come on Solid Snake!"... I think I have the right combination of a daft sense of humour, common sense (as a contrast) and the ambition to just have as much fun as physically possible, but thats just me.
I was having a pensive moment earlier and reading the news on the BBC website. What really caught my eye was an article with the title "Sexual Harrassment In The World of Video Gaming" and it was something that I wondered what they would have to say about it. Although I am frankly very shocked that no one noticed this before.
Traditionally the realms of the computer game world have been the reserve of men, even 20+ years since gaming began the majority of gaming and particularly online gaming is taken part with by men. Its appalling to read of how some women are even subject to verbal abuse as a result of them not being men in a macho environment. I myself have had countless men throwing abusive comments towards me while I have been playing on my X-Box. One particular comment came from a man I was beating rather spectacularly at Burnout Revenge. He became so incensed by the fact that I was frankly wiping the floor with him that he decided that rather than flirting with me that he would prefer to say things like "so, you haven't got a boyfriend... bet you're still a virgin aren't you" and then he thought it even funnier to call me a "posh whore" because I am not an American girl, but I am an English lady. "Go back to London, Mary Poppins."
Funnily enough I did report this person and avoided them in future games. Sadly however this hasn't been an isolated incident. One of the more shocking ones I ever had involved me playing with my PSP after work. I was sat at the bus stop and playing Crisis Core and this lad I actually worked with came and started taunting me, asking when was I giving MY PSP back to my boyfriend. I looked at him and he carried on saying about how I shouldn't have been allowed to buy it on account of my sex. I was so offended I stood up and walked away, waiting for the next bus so I wouldn't have to sit next to that blundering moron.
I find people who say that women shouldn't game absolutely appalling. I also find it vile when carers came in to my home and a few of them just looked down their noses at the games consoles. What was worse was the fact that these people were women, fuelling the sexist attitude that games should be a male past time rather than something that can be enjoyed by pretty much everyone. Growing up, a lot of girls outcasted me because of my love of games and some of the boys found it funny, now I get guys who will actually flirt and try and get their hands on me... Sorry boys but I only have eyes for one!
I am proud to say that I am a Gaming Girl and I will always be a gamer.