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.

Wednesday, 20 February 2013

Disabled. And Proud...

I recently got talking to another young person on Twitter who has an illness and I was appalled to hear of how badly people treated him and how it had really damaged this person's self esteem. I know humanity has the potential to be either incredibly kind and understanding while at the same time, cruel and spiteful, but it doesn't make me any less angry about how society looks down their nose at people (in particular the elderly towards younger people) who have medical problems and are cruel enough to make comment or gawp at them (or in some cases, laugh and make fun of them) for no other reason than that they are different.

We aren't freaks. We aren't weak. We aren't 2nd class citizens and we didn't ASK to be this way and no one has any right to make us feel this way or to point out our flaws as if we never noticed them ourselves.

People with all kinds of disabilities face daily discrimination, intimidation and other cruelties at the hands of other people and I, for one, think that should stop and people shouldn't jump to make judgements or look down their noses at us. My own experiences of this have included being shoved out of the way (and one person, to the amusement of the security staff at the Kingfisher Centre last Christmas, decided that it was appropriate to knock me off my mobility scooter, subsequently causing damage to my ribs and back which made things even harder), laughed at by chavs and refused simple things like bus travel or the right to carry on my life as I choose because I use a mobility scooter or a nebuliser.

Another thing that recently got my goat was the way that the DWP were looking to withdraw vital support to disabled people, attacking our benefits and trying to shove as many disabled people in to work, even if they have proven time and again that that would not be viable, yet they were leaving the people who have been claiming unemployment benefits for years and years because they can't be bothered to go and look for work and would much rather sit around all day and do nothing, coasting along in life and expecting the UK tax payer to foot the bill. One thing I did agree with was that they were thinking of taking these lazy sods who have been claiming benefits for over 5 years and not bothering to look for work and making them work forced work placements, such as cleaning parks or facilities to give back to the communities that they have taken away from, but that is just the opinion of one person.

I want young people with disabilities to stand up and say "You know what, yes I'm disabled. Yes I have flaws but you know what? It is those flaws that make me a strong and I am not ashamed of the person I am and how I choose to live my life without limits and without seeking the approval of others." I want people to remember that they are strong and that they can stand up with no shame and know that they're doing everything they can to make it through. Incurable doesn't mean hopeless and who knows, maybe one day, all illnesses and disabilities may be treatable and we can all stand up and be proud of who we are.

Wendy xx

Sunday, 17 February 2013

Up and Up...

Winter can sometimes be the hardest time of year for those who live with a chest illness. What with the cold and damp, ice, snow and onset of all kinds of chest bug, flu or other problems. It is no surprise that this winter I have had my share of problems and the complications that can cause (just getting over pneumonia at the end of last year and then having another smaller lung infection that meant that I was on antibiotics for 2 weeks. My asthma is still all over the place and I have recently had to review everything with my lovely GP (who is almost like a father figure and a friend).

We started by looking at peak flows, my current medication and we looked at what we could do to essentially fire-fight the symptoms and try and get everything on to an even keel. We have introduced Tramadol in to my normal medication (its been proven that it helps me and makes the pain easier to live with) which was something that we were previously a little wary of, but now it is on my normal meds and now I am coping with the pain a lot easier. We are also looking at my maintenence dose of Prednisolone, its currently 15mg, but I have been given instructions to knock it to 20mg when my peak flow and symptoms are troubling, we then aim for a week of no symptoms before reducing it back down to 15mg... And I am to continue with inhalers and nebs as normal.

So far, I seem alright and I am feeling like I can cope. I have been playing with the animals (including new additions Kibou the guinea pig and the rats, Dante (who is Becky's) and Virgil (who is mine) as well as Nero, 'Daj, Gizzy and Tenzou). It took some time to tame Virgil as he is a nervous rat and he is easily spooked, but now I can get him out of his cage and he will happily lie on my lap while he gets stroked. They are funny little creatures, rats. Amusing to watch as they run around happily and then decide that they want some human interaction. They're not as laid back as guinea pigs or hamsters, but they are very intelligent and they do respond well to kind words, gentle handling and treats. He's slowly coming out of his shell and he does love to be cuddled by his mummies.

I got my hands on the "Sephiroth" Eau de Toilette. I am alright with some perfumes, so long as they aren't too strong (me and Eau de Parfum do NOT mix well, as an Eau de Toilette is a lot less strong I tend to cope alright, as long as it's ONE spray every so often) and I have to say, it is a lovely scent (the perfume is a bit more fruity than the candle, but you do get the exact same scent, its like Twilight mixed with something else, not sure what yet though), a bit mysterious and deep, notes of fresh blooms, amber, vanilla and musk. Definitely has the makings of a signature scent and I really loved how it was presented.

My first impression was the elegance of the presentation box. Black, with silver embossed writing saying "Sephiroth - Eau de Toilette". It was such a simple thing yet so bold and it makes such a statement, much like the character himself really. It does come with a plastic slip-case around it to protect the box and has the Japanese label on it (this product is hard to find for a reasonable price outside of the UK so I was quite lucky in this one, it is is a special thing really, and not something that I would be wearing every single day (as much as I would love that, and believe me, I would love to smell like my hero every single day).

On opening the box, I found the bottle well packaged and in a protective foam to keep it stable and secure. The bottle itself is absolutely beautiful. Made from black crystal glass and it has the one wing symbol etched on in silver, along with the name of the scent. It has a small black silver wing charm hanging from the neck of the bottle, it's so elegant and so stylish that it does seem a shame to have it hidden in the box all day every day, so I have to have it displayed out of the box and on my dressing table. One touch I really liked was that the charm was wrapped in tissue paper to avoid it scratching itself or the bottle.

It's a wonderful addition to my collection and when I smell it, I can almost feel a black wing wrapping around my body. It really is something to behold and there really isn't words to describe the scent. Other than dark, mysterious and elegant, it's a unisex fragrance that is as masculine as it is feminine and elegant. It does really suit the character that it was based on (I was skeptical when I ordered it a while back as it was a perfume based on a fictional character, but I was really impressed with it). I think this is the sort of memorabilia that Square Enix should make more of, maybe creating fragrances for characters such as Vincent Valentine (from FF7) or Seifer Almasy (from FF8) or even Gabranth (from FF12). There are two other perfumes available, one is based on Cloud Strife (FF7) and Lightning (FF13) but I think I will just be happy with my Sephiroth fragrance.

As for the small, silver wing charm? Well I thought it was a shame to leave it in the box or on the bottle, Becky gave me a really good idea to take it off the string that it was hanging on and hang it on a silver chain and wear it as a necklace so I can wear it and always have that reminder of a character who has made me feel strong despite my troubles ever since I was about 10 or 11 years old. It was a one off thing and to find it at a reasonable price instead of the usual price tag of over £100 (I love ebay because you can get some real bargins) without having to pay import costs or things like that.

I am hoping that this is the beginning of a rapid improvement and a good omen for things to come. I am glad that I have landed on my feet and I have wonderful people around me who make it all feel worthwhile. I've started the new year well and managed to break a bad habit of self-harming. It's been 9 weeks since the last time and I really REALLY want to keep this up because I feel better for not cutting myself and I finally feel like I am getting somewhere.

Wendy xx

Thursday, 7 February 2013

Kicking The Past...

One thing that I have come by is a scented candle. This particular candle is very special. It's a black candle in a glass holder, etched with a tribal wing decal and quotes from the film "Final Fantasy 7: Advent Children", in a rather delicate and tasteful design, and is fragranced with the aroma of the "Sephiroth" Eau de Toilette. I added it to my collection recently and I sat there for a few moments just smelling the delicate fruit notes with earthy undertones, soothing lavender and vanillary kind of smell (not at all unlike the Twilight bath ballistics and the limited edition shower gel that I stocked up on at the end of last year, (yeah, that surprised me as well...) I think I have enough to last out the year) and it almost made me feel a feathered wing furl around me. It was weird how it actually smelled quite like how I thought he would. Kind of earthy and sensual as well as calming and refreshing. I am also getting hold of the perfume (not really so that i can splash it on as that would be a HUGE no no for me, but so that I can wear it occasionally, like my Amaretto perfume) complete with an elegant wing charm which I will probably put on my phone along with a keychain I made with a "Trading Arts Mini". 

I don't burn things like candles. I find that if you burn them often, along with incense and other things, it can become very claustrophobic and clammy in the room. I personally find that if you have 1 scented candle in a room, its subtle and it makes the room feel fresh and clean. Along with, of course, fresh sheets and making sure everything in the room is dust free. Of course, you do have to be careful when trying to maintain cleanliness, its too easy to get things wrong and even easier to wind up forgetting some critical signs that something isn't quite right. I know this, I have done it enough times. It is nice though when you have spent time working on something to just sit there and just think. I think about my projects. I think about the people who have helped me keep my dreams alive. The people who have constantly pushed me to keep going, even on those days when everything seems futile. And the people who have been there when everything went horribly wrong and helped to pick the pieces back up, even when things didn't seem like they could get better. I am thankful for those people and I do honestly feel blessed to have them in my life.

This year has been one about change and so far those changes have been brilliant. I've stopped doing something that was really destructive and it has taken a lot to do. Its been 8 weeks since I last picked up something sharp (either a piece of broken glass or a sharpener blade) and dragged it across the skin on either my arms or my leg. I've done it on and off since I was about 12 but I never ever managed to work out how to stop completely. As a teen, I used to hide it under long, baggy clothes. Or do it in places that no one would ever think to look. The worst one was when I dragged a freezer saw over my arm and needed 5 stitches to close the wound. Its taken me a long time to get over the flashbacks of that day and every time I looked at my scars, I would almost see the whole scene play out over and over again. By finally talking it through, I managed to finally put that to rest and as a result, I realised something. I don't actually NEED to drag sharp things through my skin because of the actions of others. I think that this is a big part of putting my past behind me, where it belongs and its something that over time, I am going to be stronger and happier as a result. I feel that there really is no merit in dragging the past up or point scoring, eventually people stop being interested anyway and then they avoid the one who can't let go. What is important now is that I have improved my life (of course with help from Becky, Nat and Jace) and I am now a lot happier for it. I am going to let this continue and I am going to continue going from strength to strength.

Wendy xx

Sunday, 3 February 2013

Where Have I Been?!

I've been away for a while in terms of blogging. I think I needed some time to clear my own head and think about moving on, not from my blogging, but from events from the past that bore memories that just made me feel miserable. It's going well and I am finding myself gaining more and more confidence in both myself and those around me. I don't feel as scared anymore and actually enjoy it outside of the flat. My scooter has been a welcome change to my life and I am more than happy to go up to town on it or go out for a rumble. It's like I have my freedom back. I feel free to enjoy my life again and not be inhibited by breathlessness or pain.

As part of the reforms, I had my ESA and DLA reassessed recently. For some people, that letter and that questionnaire on the doormat can be such a daunting thing and a cause for a lot of stress and worry. The company, ATOS are renowned for their lack of sympathy and their unfair assessments and for a lot of people, what they decide can be the difference between living comfortably and living in serious poverty. The form itself is a daunting one and I spent over 2 days (in short sittings) filling it out and painting an accurate picture of what my life is like. Also my doctor was contacted and he backed up my form with his view of my health problems. Luckily for me, my ESA was decided to continue as before (as I am in the "Support" group) and that I wouldn't be losing my DLA at any time soon. So this in itself has allowed me a sense of stability and I have been endeavouring to get my finances back in to order (something that is actually going well for once) and concentrating on paying my bills on time.

Between us, Becky and I don't live in luxury but by living sensibly and making sure that all the bills are paid on time, we live relatively well. Neither of us has to go without and we support each other as we need to. It's a nice, relaxed way of life and one that has given both of us a great sense of happiness because we have both found out what works.

Just recently, I have been working out my new (albeit 2nd hand) iPod. I upgraded in the end because my old Nano was getting a bit on the old side and well, I fancied an upgrade to something new and a with a bit more to entertain me. Becky has had an iPod touch for a long time now so she showed me the best, and worst features of them. Things like accessing Twitter and Facebook as well as games provide a welcome distraction on those days when you just need to take your mind off things. Right now I am hooked on the popular game "Nyan Cat" which probably needs no formal introduction. The other day when my asthma decided that it had had enough, we sat playing in the corridor (anything to help me relax and breathe easier as I was struggling a little despite being on oxygen) while waiting for a cubicle (admittedly after a couple of hours, I dozed off a bit, I was so exhausted!).

I'm not recovering very well at the present. Maybe its the shock of the cold snap we had or it could be other factors, but this is a stubborn infection that refuses to budge yet again. I am hoping that after a few more days of antibiotics, painkillers, nebs and steroids, I should be back on track sooner rather than later. One welcome change in things right now is the addition of our lovely new guinea pig (after the loss of the beautiful Zell ) called Kibou and our new rats (as Eva passed away suddenly), Dante (who is Becky's) and Virgil (who is my rat). Dante is a dead spit of Lightening but hes not anywhere near as smelly or as grumpy. Virgil has her nose though! But hes a bit shy but does enjoy a brief cuddle in my arms and a play with his brother. Dante is a more adventurous rat who loves running up Becky's arms and her sleeves! They're entertaining pets to watch and after only a week we are fond of them. Kibou is a little baby and since meeting Tenzou he has really found himself someone to play with. I think Tenzou needed a younger pup to keep in check rather than having an older pig bossing him about!

It's been a weird couple of weeks but things are progressing and everything is, dare I say it, going EXACTLY how I want it to be.

Wendy xx


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