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.

Friday 31 August 2012

I've been very unwell again. This doesn't really come as too much of a surprise nowadays but its still very tough to have to cope with. I mean, I should have worked out the warning signs really, especially when all I have wanted to do for the last week is sleep and I have not been too far away from my home nebuliser. I'm just not interested in anything right now and I have a fever which is persistent and making me feel really uncomfortable.

In myself I have become even more withdrawn than usual. Barely want to talk to anyone, and this cough I have had has sounded like some kind of bull seal trying to give birth to an elephant... its surreal, but it sounds so weird. knock it in with my fever and my asthma then we have on our hands something that could be bad if given an inch. I've been on my antibiotics for nearly a week and I haven't started to make acceptable headway as yet. We all know where this is headed, but I am hoping beyond all hope that it won't be the case.

I'd had a long stretch between admissions and I had been hoping that maybe I could keep that up, but we all know its never going to be the way, but you know what they say about the best laid plans of mice and men. My hope is to at least get to Monday and be able to see Jace again. I miss him madly when we're apart and its like someone removed a massive part of me. I love him. And he loves me. That means more to me than anything I could tangibly own or hold. With him and Becky around, its nice to have a support network to come home to and to keep fighting for.

Becky has been a real saving grace during this whole thing. She listens to me when I feel a bit down and tries to offer some support or advice, on nights with 39 degree fevers, she sits up and helps me to try and cool it down and then makes sure that I eat or drink something. So that is definitely something to be happy about. It improves my quality of life and in some ways, makes it easier to rest and recover from things. What I enjoy most, is the knowing that I don't have to go through this kind of thing all by myself, unlike my usual methods of doing things.

I got so used to hiding my signals and symptoms from people because I would worried about the sheer inconvenience that my conditions and problems cause others. Now I just think that yes it may disturb a night of staring blankly at the TV, but it would be a bigger inconvenience if I was to have an attack and die right there and then. That and the paperwork for a sudden death is probably something of a nightmare and then there would be the crazy task of divvying up my worldly goods and other affairs. I mean my home is full of eclectic items, paintings and other strange objects and I would not envy whoever had to sort all that out!

A bit more positive news, we're having the bathroom refitted. OK so it's only going to be basic, white walls, beige flooring, white tiles, but working fixtures and a toilet that isn't temperamental unless you flush it in exactly the way it wants to be flushed would be something of a novelty, to go with a recently refitted kitchen and next years refit of carpeting, laminate flooring for the bedroom and a bit of new furniture to really pull the place together and make it look magnificent. I love this flat and knowing that I get to stay here is something of a wonderful thing.

Loves
Wendy xx

Monday 27 August 2012

I have noticed that recently, there is a number of individuals who seem to think that something that causes a lot of pain is really funny. So in a display of solidarity and inspired by Ducky, I want to put out an open plee to stop this idiocy. It isn't funny. It isn't clever and unless you have been there, it is impossible to put in to words just how much hell it can put a person through.

I am talking about the subject of rape.

I was raped. First time was regularly for a whole 6 week period when I was 12. I knew the person who did it and he had spent most of my time at primary school picking on me. I am not naming names, purely because I don't want to give that person the satisfaction of knowing that he hurt me. I never pressed charges because I was too frightened and was told that if I did then I would be killed. When I did speak out once, I was assaulted by this person and since had to live with the fear and knowing that this person violated me at such a young age. It happened once again when I was 15, again I knew the guy and was too afraid to press any charges.

The long term effect on me was that it took me a long time to learn to trust people, especially men, again. I still wake up in the middle of the night because of flashbacks and still don't like certain sights, sounds or smells that can trigger a flashback.

Rape isn't funny and it isn't something that should be taken lightly. If you have had it happen to you, I do urge you to speak out and not let these animals win.

Loves
Wendy xx

Tuesday 21 August 2012

Results

I have started to keep a written journal again, I think my biggest plan is to get it all published. I want to show people that my life isn't over, just because I have the conditions I do. If anything, being ill has given me the time and space to enjoy my writing and art, it makes me want to produce something worth remembering and worth people enjoying. So sometimes I will walk with Becky, obviously quite slowly, to a place where I can think. I don't want to publicise my secret place of peace (well its not that secret, but it is really out of the way).

It is in this place that I can be found, just sat on the bank of a stream, either watching the flow of the water, throwing pebbles in to the stream as I think of and process another memory. I speak to my departed little ones and listen to my heart for a change and not my head. It helps because I can access things there that were previously locked away when I would write in the old YMCA place. That place drained all spark from me and I was so depressed as I looked out over the balcony at an endless grey. As I sit there with my purple book with white flowers, a pen and my IPod, I write page after page of ramblings about life, and what I have been doing.

As I sat there the other day, I was wondering about something. 2 weeks ago, I had a pelvic and transvaginal ultrasound scan (neither of them are particularly pleasant, but they allowed a good view of what is inside). It took me 2 attempts to get in the room, from nerves and that part of me that just really didn't WANT to know what has been going on. I knew from the age of 16 that I had PCOS and a retroverted uterus and that I would struggle to carry a baby, but I think knowing that there is something really wrong with my reproductive organs is probably something that would make the possibility of being a mother an impossibility was the one thing that could have made me feel worse about myself. I was pondering over it and then asked my guardian spirit what I should do.

As usual he took his time to reply, but he just calmly told me I needed to just go for it. If I wasn't going to face up to it now, when would I? It's alright to be scared, its a lot to take on for most people and for me it was like having to add yet another thing that is wrong with me, but it just seemed so final really and I didn't really feel like hearing once and for all that it was going to be hard to have a child. I haven't had the full results, but yesterday while I was booking an appointment, the receptionist asked if I would like to hear my scan result. She explained that as there has been something found in my scan, I have to book a doctors appointment and will more than likely need a referral to another doctor. I am scared, but I know there has to be something going on or I wouldn't have the pain, lumps or the fact that I haven't had a period since May.

I don't really want to dwell on it right now. To be honest there are more pressing matters right now and if I was to fall apart as a result of all of this, then it would be very selfish and unfair on Becky as she has a lot on her plate right now and she doesn't need me crying about something that can't be helped right now. I would much prefer to focus my energies on something else and just keep going until I know exactly what the problem is and how I can put it right. I am letting Becky in, but in some ways I just want to protect her from what could be happening to me. Until I know, I won't speculate.

Loves
Wendy xx

Sunday 12 August 2012

Last night was an odd one. I had gone to bed around 11 originally, but due to a pain and difficulty in breathing, I was awake again by half past 12. So I ventured back in to the living room and was soon joining in with Becky in a bit of Model Madness! It is something of an open secret that my home is populated with many models of characters from my favourite games or anime series. It can be amusing to sometimes gather a small collection of characters and a camera and just have a good time in composing and shooting amusing images.

RAWER!! ONWARD!!
Becky had been using some of my Final Fantasy XIII models to compose more serious and characteristic pictures, whereas I was more interested in amusing myself with some more humorous images with one of my newer models, Raiden. Raiden is an interesting character and one who I was finding amusement with props (such as his assortment of accesories and other small objects in the room) and other characters, from other Final Fantasy XIII characters or even my small plush toy of Scar, who has been with me ever since a family holiday to Florida. I think the way I managed to perch Raiden on there was definitely worth it and it made both of us smile because he looked so contented riding on a lion. Scar was my favourite character in the Lion King and Raiden is one of the more interesting characters in Metal Gear.

Call me cute again. I dare you.
Hunting
This image was well lit (with Becky's booklight and against the right background. I wanted to make it look as though Raiden was hunting someone down. ready to make his kill. I wanted to make a small model look bigger than he actually was (considering that the actual model is about 15cm tall) and I wanted to almost bring him in to a lifelike scale. The clever thing with photography is that you can use perspective or other clever things to make something look a certain way. I love playing with perspective and props to give the characters and models life. There are times when I do wonder if the models do talk back to me, even though we know full well that it is impossible. But with photography and some lighting effects you can really make it seem so. Even if that is just a kind of fantasy or imagination, but each one has it's own personality and character and they all come to life in their own way. Sometimes my models provided me some kind of solace when I was feeling low. Even if they were just plastic models that just require a cleaning every week.

Another thing I wanted to show was the new agreement for my tenancy. This is the result of hard work and goes to show that when things are done properly and not by assumption that things can be done. As I had been the only tenant to live at the property for over a year (yes my ex's name was on the original agreement, but his side of the tenancy would have been at severe risk as he was not using the property as his home for over a year and had he received the flat by any kind of injustice then he would have been recharged for the rent, council tax and maintenance costs, of which that half I would have been refunded as I had paid them, the words of the tenancy team) the housing team all backed me and awarded me the property. When this agreement was signed on the 8th, I knew at that point that I was safe and I wasn't going to lose my home. I think we must have squealed and jumped around for about an hour after the signature. Now the old tenancy ends in under 2 hours. After midnight tonight, my ex will have absolutely NO right to the property and I can go on with my life and forget this farce, enjoy my home (and my lovely garden) for as long as I reside here. Yes this may seem smug, but knowing that we won and no one can take this away from us. My next aim in life is to do an OU course and my piercing course. I want to do these things and I am dedicated to what I want to do. Maybe one day, I can finish my HND and carry on getting my own life back on track.

I can thank my brother, my Pops, Becky, Jace and Nathaniel and Tom for all their help, support and council. Without those people I don't think this would have been at all possible and I think I would have fallen back in to my old role of the submissive one. They reminded me that when something is worth fighting for then you should go ahead and do it, say "You know what, just you try it and see how far you will get, but don't blame me when you look even more foolish".

Loves
Wendy xx




Wednesday 8 August 2012

New Tenancy...

It's a new day and its probably one of the things that I have been looking forward to the most. Today is the day that I sign a new Tenancy Agreement for my flat. Its not going to change anything big, but it does mean that the flat is completely and utterly my own and any attempts to usurp it again will be an exercise in futility (and stupidity). It was surreal to see the form that was filled out when we applied for this property. My handwriting was a little messier than usual (but I had been recovering from a broken hand still and now have only just rehabilitated my hand), but the reasons that we had been in such a high priority for the housing (and I still am) were so simple that they were in black and white, my disabilities were adversely affected by the accommodation that we had been living in. No other reason or anything else contributed.

Now, had I have been the one to vacate the property, my tenancy officer explained that as the property was known as "adapted", then the remaining tenant, who would NOT have been entitled as he did NOT have any kind of disability whatsoever, would not have been able to keep the property as the council didn't have, and still don't, a duty to house him. He would have had to have left the property and gone back to his father's squalid hole. Now he seems to think that I used him to get this property, but neither us, nor the housing officer who has all the information to how the property was obtained, nor the other parties involved are able to see where or how that has come about. All we can see is a little boy who isn't getting his own way and throwing a massive temper tantrum. A lot of people who know us both mutually think that hes childish and frankly pathetic, trying to cause stress and injustice because he knows he screwed up and doesn't really want to face up to it.

Interestingly enough, he has been giving me all the evidence I need (through his blogs, his spiteful comments on my blog and the "charming" emails he has sent me) to actually go through with a case for harassment (with which could carry with it either hefty fines or even prison sentences) which, if I did pursue it, and if it does carry on, you can bet I will pursue it as we even have a crime number from the local police who are monitoring the situation fully, could give him such a black mark on his CRB check that he would never ever get the clearance to work with vulnerable adults or children, which in turn would make it impossible for him to EVER work in the teaching sector. What I don't get is that he sent me an email telling me not to contact him and that he wants nothing to do with me, but why is he still trying to snipe and cause trouble with blogs? But that is beside the point, this blog is about a triumph and a win that I think everyone knew there was little to no chance of it not happening.

So here we are, and here I am with a copy of the new agreement. We are triumphant and delighted that our home is not at risk and both Becky and myself have shown what can be achieved when you go by the books and do everything I have to. I am happy and I have achieved everything I have set out to do on this kind of thing. This is proof of a "happily ever after" and a second chance at life which I never believed possible. So I leave you now with the proof that all things can come right even at times of emotional distress or even when someone wants to attempt to make me unhappy or scared.

Loves
Wendy xx

Saturday 4 August 2012

3 Years in The Making...

OK so I have finally started the series of 2 hour appointments with my tattoo artist, Jake. It was nice to get back in touch and I really enjoyed the banter. You see, Jake and I began work on a tattoo over 3 years ago. This tattoo was going to be my biggest celebration of something that has been a huge part of my life ever since I can remember. Until today, we have only had 4 hours worth of work done on it, but I had been in love with it so after 3 years, you can almost feel my anticipation as I walked in to the studio and attended my appointment.

It is fair to say, for me, the preparations needed for body modification can be demanding and at times difficult. Before I can even attend my appointment, I have to increase certain supplements and some medications as well as tweak my diet and other things to ensure that my body doesn't shut down or anything else which could make the whole experience unpleasant. I can't go to an appointment unless I have got no other problems and I have had a good nights sleep before hand. The morning of the appointment is spent washing and cleansing the skin, paying particular attention to the area that is going to be tattooed, as well as other areas which are prone to smelling.

I know that may sound a bit strange, but tattoo artists appreciate these things. I mean they work closely with people, and the last thing they would want is to have to sit and work on someone who smells like they haven't seen a shower in the last year. That and it really is common courtesy really, alone with popping a breath mint or two. If you are courteous and polite to people, they tend to be the same back, its one thing I have come to know about how things work. And building a good relationship with your tattooist can be very important, especially if you are going to work with them for a while on a long term project, such as a sleeve.

The actual apointment went well, even if it was a bit more painful that I was expecting. I was good though. I sat for the full 2 hours and didn't mind at all. I will be the first to admit that I had forgotten just how draining it can be to sit for 2 hours while your skin is being essentially traumatised. Tattooing does cause some damage to the surface layer of the skin, but its because you are injecting precise designs of pigment in to the skin and things do become a bit tender and understandably very sore. In the sitting, Jake worked very hard and refreshed the whole tattoo which covers my entire right bicep, as well as working in other things, like a splash of colour and some very wonderful detailing.

Now Jake has a bit of a waiting list, but that is because he is one of the most popular tattoo artists in the area, but from the 8th of January, I am going to be having regular sittings with him until down my arm is a beautiful, colourful and inspiring sleeve featuring my favourite characters and creatures from the game series. I'm pleased with the work as yet and when its all done, I am going to proudly show it off, heck, I even want to be proud of it when I am old and grey, probably riding a mobility scooter with a custom paint job! Yeah, I am still a crazy, arty little lady who enjoys her life and is proud of everything they achieved.

Things are on the up and I have to say I am happy with how they are. I have a wonderful group of friends around me, these people have been there through it all. I live with Becky, who I think is as close to me as a blood relative and I love her to pieces and I have Jace, a man who knows I have some problems and yet doesn't see them as anything other than quirks and doesn't see me as below him. I'm lucky that I have a 2nd chance. I know now that moment when I woke up after almost losing my life was the moment when I was really going to start down the path I am walking now. I guess sometimes it takes a little trip to the edge to start the process of rising from the ashes.

Loves
Wendy xx

Labels

ABG (2) acceptance (5) Adventures (1) Alphonse (2) Ambulances (5) Amusement (1) Angry (3) Animals (2) Another Day In Midgar (2) Appointment (1) Art (4) Asthma (22) Asthma Attack (12) Asthma UK (2) Awareness (2) Bad Attitudes (1) Bass (1) Benefits (3) Birthdays (3) Blogs (2) Blood Pressure (1) Books (1) Bucket List (1) Busy Day (2) Calming (1) Catherine (2) Childhood (2) Chocobo (1) Christmas (4) Cleaning (2) Close Calls (1) cold (1) Comforter (1) Compensation (2) Creativity (1) Cruelty (1) Custody (1) Cute (1) death (3) Debt (2) Depression (4) Design (1) diary (1) Disability (1) Disgust (1) Disney (1) Distraction (2) Doctors (4) documentary (1) Dr Pike (1) Dreams (1) Drugs (1) DWP (1) Dye (1) Eating Patterns (1) ESA (1) Exhaustion (3) fair share (1) family (1) Films (1) Final Fantasy 7 (5) Flu (2) Fluid (1) Food (1) Friends (7) Gaming (2) Gizmo (2) glass half full (3) goodbye (1) GP (5) guidelines (1) Guiniea Pigs (6) Guitar (1) Hair (1) happiness (6) haters (1) Help (1) HND (2) home (3) home use (1) Honesty (3) Hope (4) Hospitals (8) Housework (1) Human Nature (1) Illness (5) Infection (5) inspiration (1) Instincts (1) Joke (1) JP (2) Judy (1) Labas (1) Life (2) lost cause (1) love (1) Luke (1) Lungs (3) Lush (1) Me (2) Medication (7) Memories (1) Mike (1) Mind (1) MSN (1) Music (6) My Past (1) Nathaniel (1) Nebuliser (8) Needles (1) neglect (2) Neighbor (2) new look (2) New year (1) NHS (2) Noise (5) Omen Shadow (2) One day's supply (1) Organ Donation (1) Pain (3) Patch (1) PDSA (1) Poem (1) Positivity (1) Pred (3) quotes (1) Rachael Wakefield (1) Rachy (1) Random ideas (1) Rant (1) Recovery (7) reinvention (2) Reporting (1) Routines (1) sad (1) salmonella (1) scared (1) Sean (1) Selfishness (1) Sephiroth (4) Sephy (3) Simon's Cat (1) Sims 2 (1) Sleep (6) Sorting it Out (1) Spite (1) Steve (1) Store Room (1) success (1) Support (2) Survival (4) Tattoos (1) tears (1) Technology (1) Temparature (1) Thank You (4) The Crow (1) Therapy (1) Thoughts (1) Thrash (1) Tired (1) Toys (1) Transformers (1) Transplant (1) Veins (1) Vomiting (1) warnings (1) West Midlands Ambulance Service (2) winter (1) work (1) Year (1)