Moving on...

So I am beginning the process of moving on from my home in Abbeydale to a small bungalow on the other side of town. Basically, the main reason this is happening is that my place now currently doesn't fit my ever growing and ever changing needs and it's no longer safe or practical for me to live here anymore. My new place is lovely, out of the way and in a really quiet area where I am unlikely to run in to any issues (not having anyone upstairs will be a huge part of that, its not easy to have people living on top of each other and it causes more friction than anything else) that I have had here. Don't get me wrong, I have loved this flat and it has been my home for nearly 5 years and it does kind of suck to move on but I'm just looking towards the future. There are things I will miss in Abbeydale (mainly some of the people here were quite lovely) and things I won't (like the acrid stink of weed in the air which seems to linger throughout the estate).

My new place is a lovely little bungalow, one bedroom (with cool sliding doors between the bed and living rooms so that I can almost live open plan), a small room which will be the animal room, kitchen, hall and wet-room. This means that I can be a lot more independent and able to take care of my own needs a bit easier. This is fantastic because I won't rely just on carers, although they are a fab bunch, and I will be able to live my life in a way that suits me better. Obviously with moving comes a lot of work and stress but its all going to become a part of that "greater good" that I have been working hard towards. I want a better life for myself. I want a better future with people (and of course my animals, without whom I would be empty) who I care about and I want to be able to cast off the past and get on with my life.

The past is the past. Get over it and move on. Don't wallow in the misery and become a martyr to it then complain when suddenly you find yourself completely alienated and alone. I've moved on from a lot over the last few years and the whole thing didn't kill me. It made me stronger. I learned that I must value my own self as well as putting the other people's needs (not wants) first and that in trying to be kind, I put myself in situations that I really didn't want to be in. The key to moving on is to know that even though you made a few errors, you aren't a bad person. You are entitled to be happy. And no one ever has the right to make you feel otherwise because they want to stay anchored to one thing in the past.

I have enjoyed the nearly 5 years I lived in this flat. Theres been laughter, love, friendship and a sense of belonging here. There have been great times and times when things seemed to be harder to work around but the main thing is that I never let things get too bad. I think that a new year and a new start will be fantastic for me and it may even help me with my health. Being in a quieter part of town and in a place that's easier to access may be the best thing for me. I'm not for one moment suggesting that I will be perfectly well and not on oxygen or in a wheelchair but maybe these good days which I hear so much about may come to pass more often and hopefully when I have done my week of assessments, tests and trials at Heartlands (we don't know when that will be yet), there could be light at the end of the tunnel and hope that things are going to move on and get better.

We just need to hope and keep a bit of a positive look forward to the future and if we do, we will get there. Just got to keep pushing now.

Loves
Wendy xx

New Start?

One of the ways that I keep myself busy (because keeping busy can really help keep depression at bay) is by doing handicrafts. There's something about making things with my hands, a needle and thread that makes me feel a sense of "Yeah. I did that and I am so proud right now." and the most enjoyable thing I have ever found was my cross-stitching. I have been a cross-stitcher for over 10 years and I still have the first ever thing I ever cross-stitched. I did this back in high school with the guidance of my friend George's mum and she helped me get in to and enjoy the process. I remember drawing it on a piece of squared paper and then working on the sewing for hours. To still have this reminds me of the fact that I have been doing this for so long and when I look at it now compared to some of the more recent projects, its kind of like "Wow... I have come a long way on this."

My most recent project has been really fun. I have wanted to cross stitch a Sephiroth image for a long time and I did try once upon a time (but I couldn't finish it due to stuff in the background) and I lost heart for a while I think. Then I found a piece of software called "CStitch 9" which means that I can convert any picture in to a pattern for my cross stitching pleasure. Theres going to be over 13,000 individual stitches worked by hand. I am proud of my work so far, this was my progress a few days ago, I have since worked more on the collar, hair and am working on the chest today. I work on it whenever I get some time spare (which is something I seem to have in spades and when the piece is finished, I want to put all the pictures taken of the progress all in one picture so I can see how it grew and have it compared to the original Nomura drawing. I don't want to know how many hours I have done on this as yet but it has helped keep me at least focused because I am really not doing as well as I could be physically.

It's mainly been issues with pain and my asthma being troublesome. Not helped that I have had a vicious chest infection recently as well which has meant that I have had all the stuff that comes along with that (fever, pain, feeling like an elephant has sat on me). Just what you need when you're trying to orchestrate something big like moving. I will be moving in the next week or so (not going to say where publicly for obvious reasons) to my new adapted bungalow.

I want to be clear about the reason I am leaving my flat. It comes down to my health deteriorating as much as it has over the last 2 years or so due to my asthma getting worse and my lungs becoming as they are now. Being on oxygen has been a brilliant change in me (before I was barely awake, greyish and couldn't speak more than a few words and walking to and from the toilet was like running a marathon for me) but its not stopped the inevitable truth that I am no longer able to use my flat as I used to. Its kind of sad because I have been here for nearly 5 years and this place has been my place of safety when I felt scared or the place I came back to. Its going to be a big change but one I can be sure is right for me. In my new place, I am going to have more access to the living room, kitchen and I will have a "wet room" so that I can have a shower and not have to rely as much on carers or other people. I will still require care, we know this, but if we can get it so that I needed less, I would be happy about that and it would be easier on the agency as well.

The hard part of this has been convincing myself that this flat is not going to be my home anymore. I am so used to it and heck I know all the little quirks and other things that came with it like the back of my hands. I will miss some things about the place and I will miss some of the people I got to know around here but it is all for the best reasons that I move and have a better chance at a better life somewhere else. It's OK to feel apprehensive though as I will have to learn new ways around things and where the new local shops, bus stops and other things are. It's close to where I used to live before so I am sure that I will get my bearings soon enough! Maybe a new year and a new start would be just the push I need?

Loves
Wendy xx

Being Home.

As my DLA is due to run out next year, I was asked to apply for PIP (Personal Independence Payment, basically the new DLA but harder to get and a different way of assessing it.) and I was actually kind of worried about if I was to be completely honest. Out of 10 people I know who have applied for this, only 3 of them got it and one person even took it as far as tribunal and got shot down (which I would have thought would have been a sure thing when they saw his condition for themselves) so obviously I approached the whole thing with caution. I hate doing the long, tedious forms that come with things like this. I know they're needed and we need to get them filled (even if it is just an exercise in getting a hand cramp) and to do so, getting someone who knows how PIP works and how to best explain the situation has helped me too.

It took me over a week to fill out as much as I could and then with my support worker, over 2 hours we filled in the blanks and made sure that everything was clear and there would be no ambiguity about the situation. My habit of trying to make light of my rather frustrating circumstances can sometimes work against me as I can give the impression that things aren't bothering me as much as they are. I think that has been a coping mechanism over the last few years to stop be from getting low or miserable about things. It's too easy to sink in to sadness when you feel like your whole body is just betraying you bit by bit so its hard to kind of explain that in a clear, objective way. I don't think I had really taken in the enormity of my conditions and what they do to my body. When you live with something every single day, those aches and pains become normal and being able to walk to the loo and back without having to rest between is a luxury not a given. We must have done really well though. I didn't have to have an assessment (which is where most people's claims fall apart) and I was awarded the enhanced rate for both components for an ongoing period. Basically I am on the highest bracket AND it won't run out like before. So next year when I renew my railcard I can get one that lasts longer.

It also means that I will carry on with Motability who supply me the lease on my wheelchair. My chair is being repaired at the moment which means that I can't go out (not that I should be with a case of bronchitis looming over my head) but it has been one of the biggest improvements of my quality of life. Admittedly it was hard at first to accept that I would need a chair to get around but as time passed and I got more used to the idea, and the new freedom it allows me, and now it, along with my oxygen, means that I can get out and about, live my life and do the things I want to do. Admittedly I have to plan things carefully (how long I'll be out, what meds do I need to take, do my nebuliser and conserver have enough battery?) but as long as there are people in regular contact and I don't do too much by myself, I am able to enjoy my freedom as well as my conditions allow for.

I do think it is hard to be in a relationship with someone like me though. There have been times when things have had to be cancelled and dates changed due to sickness and appointments. There have been times when I have had Jace down or I have been at his and I have been sickly. I think what makes me feel better is in knowing that even on one of my bad days and I can't get out of bed or do much, it's OK because we can just lie in bed and watch films on the laptop or fold out the bottom of the futon and I can rest there for a while. Not to worry, things with Jace are wonderful, its just that I wonder sometimes about the impact my illnesses have on him. Or anyone close to me for that matter. It can't be easy to see me when I get poorly and need to go to hospital or seeing me in a hospital bed and how often that can be, asthma isn't a pretty condition and it can leave you feeling physically and emotionally drained for days post attack. Obviously they willingly do everything they can to support me, from going to appointments with me to just coming to see how I'm doing every so often. I have carers who come in several times a day and they help me with everything I need help with so I can live as independently as possible. While I can live without having round the clock care, I am happy and I am grateful for everyone and everything. I

On my birthday, it was nice because my mum and her partner Dave came to see me and I even had a bunch of (artificial) flowers from the Chaplaincy and League of Friends (which cheered me right up, all purple with a sparkly butterfly!). It made what could have been a difficult day easier and I was reminded that I am loved by people and even on my bad days, I can keep going because there are people out there who are rooting for me.

Not to mention my fur-babies. When I was away, I missed my boys greatly and had to watch videos and look at photos (showing the staff who wanted to see too) to keep my spirits up. I have really bonded with Kaiba and he is such a sweet little fluffy thing, we call him "the mop" because when he flops down to sleep, he looks like a mop! He was the adoption centre pig so there were worries on his behaviour, unfounded mind you as he has been good with little Yugi (even if hyper little Yugi decides to run around and bounce on Kaiba) and even said hello today to Loki-bunny. My pets make me feel good about things and I don't know where I would be without them. Kaiba recently decided that he is interested in whatever food I have and an unguarded plate with some left over spinach and ricotta cannelloni was nibbled and licked up quickly (as well as him playing with the end of the spoon, rather cute to watch) and with some extra vit C in his diet, we have a perky and happy pig. Saying that, all my animals are happy and you can tell that they receive nothing but the love and affection they deserve. They are like my children, as due to physical problems, I was told at 17 that I would never have children.

I am glad to have been home for over a week now and I am slowly getting back on track with myself. I have a few appointments in December to do, including meeting my surgeon for my wisdom teeth. It's going to be a long and probably tiring month ahead of me but with Christmas coming and the hand made cards all nearly ready to post it's all coming together. All I need now is to get the final go ahead for something that I am not ready to shout out about yet (want to wait until its done and THEN make it public) but there are some changes coming up on the horizon and I for one am ready for them!

Loves
Wendy xx

Dear Neighbour.

This is an open letter to my neighbour because of all the stress he put me though over the last months. Chances are, he won't read it and he'll probably be too arrogant to understand the concept of consequences for how he behaves. Maybe he felt like he had won some small minded battle? I don't know and I probably will never understand how selfish some people can be.

"Dear Neighbour.

As you may have been aware of, seeing as you watched and seemed amused by the ambulance that appeared in our close last Thursday, I have been in hospital for the last week. This week was supposed to be a celebration. Because of my health problems and deterioration over the last 18 months, every year I see a birthday is a blessing in itself. Birthdays should be spent with friends and family in happy places like a restaurant, pub or even at home and be something wonderful.

Due to the stress you put me under and the fact that you just couldn't or wouldn't allow me to rest because of your music and bullying actions (planting your bin in my garden and refusing to move despite being told to by the council, you honestly have no right to that garden and I hope that when you receive the plans this is clarified. THEN putting something in my grass which one of the guinea pigs ate, such a sweet, gentle creature suffered a rather horrific death) I had a life threatening asthma attack on Thursday night. I was rushed in through A&E and the staff fought for ages to stablise me. I was then taken to a ward to rest and recover, especially as I have a history of respiratory arrest and am in respiratory failure. I really wanted to be out of here by Wednesday.

I really wanted that. It would have been wonderful to not be in hospital for my birthday and it actually hurts me more that you know what you do is so cruel and wrong (so you can't claim diminished responsibility) and I really hope you get the gratification you seem to want, because why else would a 36 year old man take it upon himself to bully a young disabled woman? Please see this as a wake up call. You took this too far, all because you were asked to keep your music down.Stop being so selfish, it's bad enough that I am being driven from my home in to the cold on a near daily basis but now I am having to move, partially because of you, partially because there is a better accommodation for me after 5 years of living peacefully and quietly among the community and I feel like I'm being punished.

But don't worry. You are getting "yours" as well in due time."

Sincerely
Wendy Jordan.

Halloween Fun!

Just lately I have really been in to my sewing. I have done counted cross stitch for a long time and it has been something I find I can really relax with. Maybe its the feeling of knowing that you are achieving something as you sew. Maybe its the fact that when I look at something as it grows and takes form and knowing that it will be something to enjoy. To quote Keats "A thing of beauty is a joy forever." I try and look for that in a lot of life because its in finding that beauty in something that makes it all the more worth doing. Even if its something small.

Last night was an example of just doing something to make someone smile. Halloween is a strange time of year because so many people are so grumpy about it (even though we were kids once too) and I wanted too do something positive and kind to the local kids. I sat and carved a pumpkin which I placed an LED light in (so that I wouldn't risk anything with candles and oxygen as they don't go together very well) and set it up in the window with 2 glitter skeletons and waited patiently for the kids to come and knock for treats. It was all in the name of fun really and to just do something kind for the kids. It's the first time in a couple of years where I have actually been up to doing something for the "trick or treaters" and I will admit it was tiring but it was worth it. I definitely felt good for taking part.

So I got a simple "costume" (well actually it was an Optimus Prime front shirt (with blue pj bottoms) and my voice changer helmet) and when the kids knocked on the door, I handed them out some sweets. I think my favourite moment was when a little boy came to the door and I knelt and made my helmet talk. Seeing the little lad smile when it said "I am Optimus Prime" was probably the most awesome thing ever. I had made that kid's night! He smiled and said "You're a Transformer!!" and I had to laugh, his mum looked so grateful that I had at least made the effort but its something that will stay with me for the reason that I had a lot of fun and I did something different. Besides, who wants to be that grumpy sod in the neighbourhood that just yells at the kids and doesn't do anything positive?

I like that the local kids know me as the "guinea pig lady" and they love coming to see my small furry friends. It's a shame that they didn't spend as much time outside this year, partially due to weather and partly because of problems with my upstairs neighbour and I didn't want to leave vulnerable animals outside in the yard unattended where anything could have happened. It's common sense really. When the animals are out though, I have no qualms in letting the kids stroke them and telling them about what guinea pigs are and what they like to eat and do. It surprises me that some children have never seen a guinea pig up close, but then again, I have lived closely with them for 7 years now and I love them as much as I always have. Whenever I need a perk up, I just look through my plethora of pictures and videos of guinea pigs past and present and it always makes me feel better, particularly a video of Kaiba and Yugi playing with a ball of paper. Kaiba loves his paper and his fluffy chops just make him a huge character around the flat!

Now comes the rush to finish my Christmas cards and get them sent out. I have sewn some to start with but decided to take a break for a couple of days from it otherwise the metallic threads would probably destroy my fingers! They will be sent out on the first of December, so I have 30 days of stitching to do. I can do this easily and its going to be nice to send these cards out when they are done. It works because now is the time of year for cosy nights in and spending hours with my needle and threads.

Loves
Wendy xx

Finding Your Track

Earlier this week, I saw something about a process that everyone who becomes chronically ill (or a "spoonie") goes through to some extent. It isn't like we wake up at one point of our lives and say "Hey, you know what, I want a chronic, long term illness that will cause me pain and generally whittle me down." and it's even harder when all you want is to get better but you can't. When people say to me "oh, well I have asthma and.... [insert some patronising comment here]. I can still do things and I don't need the stuff you do." it is extremely annoying. My asthma isn't like "normal" asthma. Brittle asthma is a completely different beast and a harder thing to work through and get through. I don't use a wheelchair because I gave up. I don't have help from carers because I'm lazy. I don't have oxygen because I want to have it. These things have been a necessary part of my life for some time and I know what they are and why they are the way they are.

Something that I was thinking about recently was the process you go through when you realise that you're not going to get better from an illness. Its like you go through a grief period of sorts, as if you're grieving for the person you used to be and the person you wish you could go back to. Its hard to understand sometimes but even for the person going through it, it isn't easy. Heck, before all this, I was a totally different person and I lived a totally different lifestyle. I was at college, looking for a job and I had a small bedsit in a really old shared house. I loved it. Waking up in the morning, crawling over to my kettle and making tea before sitting on the arm of the sofa watching the sun come up through the woods. I would then dress and walk down the hill to the college bus and go to class.

After class, I would go home (via Waterstones usually to get a book which I would read as I walked home), fix up something quick and easy for dinner and then eat it in my room while watching TV, talking to friends and working on assignments until I was tired and went to bed. It was a simple life I lived and I was comfortable and lived the way I wanted to. I don't think that I ever stopped for one moment and thought to myself "enjoy this while it lasts because soon you are going to lose everything." and I never once thought that one thing could turn my whole entire life upside down the way it did. I do wish I could go to my "old self" and tell that girl to enjoy her life. Don't get involved with a certain person and keep pushing yourself forwards, get your HND and live the dreams you clung to for so many years.

Although I guess on the other side of it, being in this situation has taught me a lot. Before it, I worried too much about things that didn't really matter too much and often missed the point of things. Sometimes you need to really have something that makes you take the leap back and look at the bigger picture. I had fun when I could and I enjoyed the end of my teens and my early 20s as much as I could and I have great memories and no regrets. Now in my mid 20s, things are so different and I think on some level, it has made me different because it has made me grow up. Instead of running away and hiding from my issues, I have had to face them, whether it was alone or with help. Because I have experienced that feeling of not knowing where to turn to when the world seems to be coming apart around me and I know who to ask for help and I have helped others to do the same. Maybe in some ways, going through the things I have has made me a better person? It certainly showed me that there really isn't anything wrong with asking for help. Asking for help has meant that I am in a better place and things are going to get better. I just have to sit tight now and let the processes run through.

One of the good things that came from all the stuff with my neighbour is that they allocated a Home Support Worker for me. What started out as a way to get me through this whole thing has become something so much more. I have someone to talk to when things are difficult and I need to just get it off my chest (metaphorically speaking) and it does help. Having that support will help me clear a lot of the things that have been bothering me and getting things back on track. Or on a better track and I will have a better quality of life as a result. I think that is my priority now.

When I say quality of life, I don't just mean healthwise. I mean in every other aspect that affects my physical and mental well-being and I have been reaching out to the right people to get the right kind of help. Whether it's a bit of help with my shopping or a bit of support with going to see medical professionals. There is always someone on hand to help and I am blessed really because it has made what could be (and often is) a really isolating and daunting experience much easier to cope and survive with. And for days where all I really need is a nuzzle and affection, of course I have my furry friends who are always around to make me feel less crappy.

I have struck quite a bond with my Kaiba. Out of the guinea pigs, he is the calmer one and he has such a lovely personality. He's the one who wheeks and climbs the cage to say "Hello" when I sit on the chair in the living room. And waits for me put my hand in to give it nuzzles and licks. Yugi is a friendly guinea pig but hes at that hyper age where all he wants to do is run around and play. I don't mind of course because it is so funny to watch and when he does come to see me, hes very cute and sweet. Kaiba is a momma's boy though and loves to be stroked and cuddled. His long fluffy hair makes him so soft as well to cuddle, although when he goes to sleep its a case of "the mop has plopped!" Hes a Peruvian/Abyssinian crossbreed so he has the long soft hair of a Peruvian and the spiky and crazy style of an Abyssinian, cute blue eyes and a lot of character. They both have a lot of personality and I sat for ages the other day watching them playing and running around. Yugi will calm down as he grows up so I just interact when he wants to rather than forcing him.

So, things are on the up and will continue to get better!

Loves
Wendy xx 

Mobility

I realised something today. It has been 3 years now since I had to take the plunge and start using a mobility aid to get around. It wasn't an easy choice I had to make and it was one that took a lot of soul searching, doctors pestering and other things to make me do. They tried to have me in a chair back when I was at the YMCA but it was due to my own stubborn nature (and the fact that I didn't want to appear weak to some people) that made me refuse and I kept on my own two feet (often with support from another person/crutches) for as long as I could. I think I finally accepted it when I was with Becky in town and I remember she was nipping up to one of the shops and I had been exhausted by the time we reached "the palm trees" area. I had to sit for 10 minutes while nebbing in the middle of town and then struggle on to Tesco (where Becky told me to get a scooter or go home). She made sure I was safe obviously and when we got to Tesco she helped me get around the store and get the shopping done.

It was after that trip and a long talk to the doctor that we decided that it was probably the best way forward for me now. My back was constantly aching with my leg going numb (resulting in falls). My knees ground and crunched as I walked and I generally was not in the best state of health. I started only going out when I could and that was becoming fewer and further between. I felt so isolated and like I was trapped within the boundaries of my home. I think it made me feel more and more depressed as I was soon at the stage where even getting from one room to the next would be difficult. I have had my old "Scoots" for 3 years and it still works, as long as you're mindful of one of the cables and when I haven't got my chair, its a good substitute. Even if whenever I used to use it, I would get some people coming out with some of the worst judgmental tripe you could imagine.

Back when I was using the scooter, I suppose you could say that my disabilities were mostly invisible, unless of course you knew me and knew what I was hiding behind my smile. This was before I started with home oxygen and I probably looked like a normal 20 something but I used the scooter to get around. While a lot of people were polite and never batted an eyelid, there were some people out there who would come out with some of the most horrible things. One particular occasion happened when I was on a bus (because the small scooters ARE allowed on buses as long as you can turn a full circle with them) with Becky. We had just finished our morning errands and were headed home to unwind and this old lady got on the bus. She snorted rudely before sitting a few seats behind us (I was in the wheelchair bay, Becky was in the seat opposite) "I'm 84 and I don't need one of those...". Becky didn't stand for it and rather politely (especially when you consider the situation) told the woman to mind her own business and stop being so nasty. Just because she didn't need one at 84, didn't mean that I didn't at 25.

There is a stigma about people and mobility scooters (particularly us youngsters). I think its because there are people who think that if you are younger than a certain age then you shouldn't need to use one. My mobility scooter changed my life as it allowed me to leave the house again with confidence that I wasn't going to struggle to breathe the entire time and my back wouldn't give way and become painful. It was motorised which meant that I could even start venturing out on my own again. Yes there were people who said nasty things (and people who gawked at me) but that didn't bother me. Heck it still doesn't bother me when I go out in my chair. People will say things and they will be cruel about it but to be honest, you do have to thicken your skin a little and remember that you don't have to justify yourself to anyone. I use my wheelchair outside of the house. Not because I am lazy. Not because I want sympathy. I use my wheelchair outside because it, and my oxygen cylinders, has made my life as independent as it can be. Which is something very important to me.

I was scanning some news recently and people were contesting that the new "hoverboard" (the latest fad) is not allowed for use on public footpaths and some people said that the same should be said for mobility scooters. One person was saying how most of the people who use them are just fat and lazy. Personally, I think that things like mobility scooters should be subject to the same conditions of use as wheelchairs. I think that the person wanting a scooter should have to be assessed by an Occupational Therapist and assessed that they are mentally and physically competent to drive the scooter around, because there are a lot of older people who whiz around on the scooters and run in to everyone. In my case, I don't have that kind of issue, I just have people walk in to me because they were too busy playing on their phone (bit of a pet peeve) and not looking where they were going!

To the people who rely on their mobility aid, it is a lifeline and it is a vital way of getting out of the house when otherwise you wouldn't have been able to. I am proud to say that I am a wheelchair user.

Loves
Wendy xx

Piece by Piece

Maybe the reason I haven't blogged for a couple of weeks is that I have been looking for too many answers before I could do so. Its no secret that there have been times recently where I have been struggling to make sense of things going on around me, people and situations that have left me wondering why they are the way they are. We all have those times when even someone with the most optimistic outlook can wind up breaking down, struggling to believe that there is a way forward and I would be lying myself if I said that I never experienced it. My arms and legs are covered in scars that remind me every day that I struggled with stuff and it really got to me sometimes. These aren't reminders of wanting to die though (even if there have been times of genuine wanting for that) they are a reminder that even through the bleak and bad times, there was still a bit of light out there and no matter how much I tried, I couldn't let myself just give up and this is where asking for help became important.

I think that there has always been a part of me that has always looked for inspiration and solace that a fictional character can bring. I think my Sephiroth obsession started when I was younger and I needed a heroic figure to give me that nudge to move forward (and I was gutted when I realised that he was never a full playable character in the PS1 game) and even though he lost himself, there was always the possibility that would be that he could find himself. Just as I have had to do. Sometimes just having a friend to talk to or give you a hug and tell you it's alright is all you need. Sometimes it is the comfort of love and affection from a cherished pet. Or even the feel and smell of something familiar and beloved (like a blanket or soft toy) that can calm the sadness inside. I have a doll. He's called Sephy (based on Sephiroth from FF7) and he has been there for me through some of the scariest admissions (often cuddled close to me in resus or held tightly as I sleep), painful experiences and some of the toughest things I have ever faced. He was given as a housewarming gift many years ago when I first moved out to my own place and has been my companion for nearer to 7 years. He has been there from when my asthma started getting this bad and every bad time between. Right now, as I sit cross legged on my bed, near a cup of tea (in a Sephiroth mug, surrounded by Sephiroth things (my first ever model, mini models, a fan, candle and perfume)) he is sat watching me as he rests against some cushions (2 match my bedspread and 1 is a tape cassette) next to my nebuliser.

That is how I cope.

I think that a couple of weeks ago, I was lucky that my carer came in when she did. I felt so frustrated because I was tired (from having not slept), in pain (from a really bad infection) and generally feeling miserable. At this point, my neighbour had knowingly been torturing me with his music for days and even well in to the night at some points and he knew how much it was making me feel miserable. I don't get out as much as most and going out often means a lot of planning as I have to take the right amount of stuff with me, carrying inhalers, nebs and o2 everywhere as well as maintaining the right amount of pain relief with limited drowsiness. To be driven out by the "bumbumbumbumbum" of dance music (the bass of which rattles the walls, pictures and has even caused things to fall off shelves) and his sly nature (turning it down as soon as he caught a hint of the council sniffing around, to gather evidence, we had to be a bit sneaky this time around) meant that I felt as though I was stuck in this situation without any end or way out.

After a string of nights where I was only having 2-4 hours of sleep, I was physically exhausted. Emotionally unable to think straight. I think I just wanted out after that point. My eyes wouldn't focus, my head was pounding and I felt sick and unable to catch my breath. I warn you now, this is probably the most distressing thing I have had to write about but I feel that it is important for healing and so that I can show that there are ways to cope. I had been gathering as much of my meds as possible, being on opiate based pain meds and benzodiazapines means that I have access to a sizable amount of things as such in my home. I wanted to just take the lot and go to sleep. I had said vague goodbyes to the people I cared for and I had put some of my favourite songs on. I was ready. It was when the carer came in, held me as I sobbed and soothed me and called out for help from the police, social services and the medical services.

That night was spent with people coming in and out and they were close to sectioning me so that I could get some rest (luckily we decided that it wouldn't have to come to that) and get this infection under control. I had a visit with the police when it was still going on at 2 in the morning and they told him to stop it. All I could think about was how selfish I was being and how ashamed of myself I was. I was willing to let my friends and family go through pain just so that I could be away from what I felt was a huge thing. I don't feel that way anymore and I have no intentions of causing myself harm as I feel that now this has happened that things are getting done about the bleak situation. Admittedly the doctor on the Monday didn't help by prescribing the wrong treatment for the condition I have ("a little bit of thrush" is OK when its in the mouth or down belows, but in the lungs it is something COMPLETELY different) and the "relaxation techniques" fact sheet (sadly there was no "Bludgeon the person making you feel like this with the hardest object you have to hand" part so it really was no help) which was put through my shredder.

I do wonder if that person realises how selfish he is being by making that kind of noise and not caring that the was making someone else feel so depressed that they were willing to take their own life? Then again, I would hate to be nearly 40 and having to pick on a disabled girl in her 20s just to make me feel like a big tough guy. This person tried to destroy me and make me feel scared and driven away from my home. Instead, it has only served to prove my own sense of solidarity and strength as well as reminding me that even when things look at their worst, there are people out there who I can talk to.

This now leads me to the focus of this post. I have been approached by a gentleman who would like me to share the link to a helpful website. The Counselling Directory UK is a resource for people who are looking for someone to listen during a tough time or looking for help for someone they care about. I will be setting a link to the website via my little side panel as well so that anyone who needs it can find the link to this wonderful resource.

Loves
Wendy xx

Don't Judge What You Can't Understand.

Getting used to my little fur-babies and finishing up on what has been a huge clear out (I didn't even know I had that much junk lying around but you know how it goes, put it in a box or a drawer and it gets left and forgotten about). I think I pushed myself a little too far and I am paying the price for it as usual. I'm still getting to know this body and what it means for me, the limitations I have to work around and there are always going to be limits. Anyone who could say "Well, it's -ONLY- asthma...." is obviously an ignoramus and doesn't understand exactly what it is like to be in my body. Knowing that I am not on my last legs is great but it doesn't make things any easier to struggle with. Would you tell someone who was missing a limb that "well, it's -ONLY- an amputation" or "it's -ONLY- cancer..." so why would you say the same with asthma? You shouldn't judge what you have no real comprehension of understanding, unless you have been there you have NO right and NO idea.

Please remember ASTHMA CAN AND DOES KILL PEOPLE. I have nearly died from asthma attacks on many occasions and I know how much of a knife edge it can be. People are so ignorant towards asthma because its been stereotyped as the illness that the "geek" kids or fat kids get. Its become a rather big joke actually and when it comes to a serious attack, no one knows what to do. Asthma isn't a joke. It is a real condition and to some of us, it is disabling. It is exhausting. It is painful. So please, next time you decide to make a judgement on someone's conditions, try and remember that it probably feels much different to how it looks. The best way to describe brittle asthma is, how a normal asthmatic feels during an attack is how a brittle asthmatic feels all the time.

The drop in lung function to under 40% has been one of the biggest game changers for me. This has only dropped in the last year or two and on my bad days, I struggle to get over 25%. This means that have on average about 1/3 of working lung and that only works to half its efficiency. So be patient with me if I can't walk too far, I don't choose not to, I just can't. Please try and understand that it takes me nearly 4 times the effort to do something that it would take someone else. Even getting up and getting dressed is exhausting sometimes and I even have days where I have got dressed and wanted to curl up and sleep. I have carers to help me, not because I don't want to do things, but so that things can be done safely and you can ask them, and I am sure they would tell you happily, I do try and do as much as I can every day. It isn't unusual to have them come in to find me flopped over in my bedroom or even on the living room floor because I have pushed myself further than I ought. I am not giving in or just sinking in to lazy habits at all.

Actually its the complete opposite. I am making steps towards making my move to Blackpool. I have a support worker and a housing officer who are working tirelessly to help me get there. It is a long process and it will take time, but every step is a step towards it. I'm getting letters from my doctors to support my reasoning and rationale (because if it was as easy as saying "hey, lets move to Blackpool" then I think a lot of people would do it in a heartbeat). But it does take time. My support worker, an ex nurse, has been chosen specifically to help with all of this and help me wade my way through it. She will be able to call upon her own knowledge and experience to say what my physical needs are and what I will need in a place. What adaptations will be put in and what help and benefits will be needed. Luckily for me, Jace has said he will look after me but we will look to see if any other support is needed as well. Some people think that getting carers in and support staff  means that someone will do everything for you and they eventually behave as such. They then give up and stop doing anything for themselves and are convinced that its because they're elderly or infirm.

That in itself is a bit of a vicious circle. Feel ill, don't do much, still feel ill, do even less, until you're bedbound and can't (or in a lot of cases, won't) even try and do things anymore. I am fighting my ass off to avoid getting to that stage because I don't feel that its a good way to go. Maybe its because I was raised to look after myself, but I can't sit around idle for long otherwise the depression starts and I get more and more frustrated as time goes on. Maybe that feeling has been whats pushed me to go beyond my limits and is now the reason that even as I am typing this, my whole body is hurting. There is blood on my pillows and the top of my duvet (from coughing I think) and I am struggling with my chest today.

It hasn't helped that a certain person drove me from my flat again with their music (this is getting really old now and I am fed up of not being allowed to relax in my own home) and I spent a couple of hours in town which was rammed, not great when you feel like crap and want to be alone to sleep. The good thing is that I have the right people on my side and they have witnessed what the situation really is, things are in the pipelines but I won't let anything slip yet just in case (because last time, he just turned it down while the investigation was being done, kind of obvious when you look at it). I wonder if this person actually understands the level of stress he is putting me under and whether or not he gets some kind of gratification in knowing that he is essentially bullying someone who can't fight back, then again, there are people out there who need to do things like that to feel "big" or "tough" and that in itself is pretty pathetic if you ask me.

As for me right now, I think I am going to watch some more stuff on my laptop, rest as much as I can and do a bit more sewing as long as the elephant stays off my chest of course!

Loves
Wendy xx

Ways to Cope

I have been having a clear out as of late. No reason really other than I was getting sick of the build up of clutter and random bits and pieces (namely paperwork) that seemed to congregate in my flat. The problem I find is that paperwork tends to mount up and even with the best intentions, you can end up with a whole pile of stuff lying around. Problem is, that paperwork tends to take up a hefty amount of bin-space but I am grateful to Natt's mum, Jojo, for gifting me with a paper shredder. Admittedly there has been something therapeutic about shredding papers and watching the confetti stream out. Actually, I use the shredded papers for animal bedding (and they LOVE it). It feels good to clear out some old odds and ends as I never realised how much had mounted up over 4 years. I actually found an old tenancy document from Redditch YMCA (I haven't lived there in 4 and a half years, seems like forever!) and I took great pleasure in destroying it as it is no longer needed or legally required.

I'm back up to date with everything now as well. Particularly things like bills. I admit during a period where I was feeling despondent in April meant that I started to fall behind. A quick clip around the ear mentally and I managed to get back on track. I think that sometimes it is my usual way of coping and I tend to shut off emotionally during times of stress and duress because I can't cope with the world and just want to close myself off from it all. It's just a coping mechanism. Kind of like when I sometimes talk to my models. I know it sounds daft but talking to toys is something I have done since I was a child and in some ways, it can be refreshing to have someone to talk to who doesn't laugh, judge or yell at you. They keep secrets too! Heck if my Advent Children Sephiroth could talk, I would be scared because he knows everything about me!

I guess sometimes I wish I could be like the kid in "The Indian in the Cupboard" who could bring toys magically to life. Except I wouldn't have a mini Indian warrior as a friend. I would have my Sephiroth models! I'm not ashamed of admitting that I do talk to them. I do tell them what's bothering me, sometimes its just to sound it out. I even make sure I have one of my Sephiroth models (as well as my plushie) with me when I go in to hospital to give me comfort and reassurance when I feel scared or upset. I have had to deal with so much on my own over the years so any way of taking the edge off it, even for a little bit, helps because there are times when I am trying to convince myself that I can do this when I am really struggling with it. I guess we all need that kind of thing sometimes and you can't hold strong for everyone forever and sometimes you need to have a moment where you let yourself fall apart and let yourself unleash the pent up emotions. And that is fine too.

Sometimes you have to accept that you can't keep it together. Stress is a very big issue for me as it can affect so many of my conditions and cause me so many painful problems. Stress can bring on my IBS and make it more sensitive. It can run me down to the point where my body starts to fight itself as well as whatever it is battling so I end up coming out in hives. Thursday night was horrible because the attack started at around 9 and by 11, I think I was just exhausted. It was the most pain I had experienced in a while, my whole right side felt as though it was burning and it still felt like that the other today (Saturday) and I have had what I think of as "aftershock" attacks. Think of an attack as an earthquake. It hits and when it hits it just completely knocks everything out of balance. Then afterwards for up to 2 weeks you can have smaller attacks (or even sometimes one that is bigger than the first) which wear you right down. Being asthmatic is an exhausting thing and attacks can have such a strain on your body. And if I haven't got over the last one, the next can be just brutal.

Unfortunately, when you live with someone upstairs who seems to think it's their right to make others miserable, that kind of gets difficult. This is a person who I think actually gets off on making others suffer for his own gain, but like all bullies, he is sadly mistaken if he believes that I am actually going to take this lying down and let him make my life miserable. As annoying as it is at the moment, its reminding myself that each episode is another entry in the diary sheets, and each recording is another piece of evidence (because we all know what he did when the knew last time (because it wasn't obvious at all) and turned it down while they investigated) that will get this situation brought to a close. Hopefully. I'm not asking for something unreasonable like total silence all the time. What I am asking for is to not have pounding dance music rattling through my home, knocking things off shelves and making the fixtures fall down and making me feel restless and annoyed. I went back to the council because although we did have an agreement, it got to the stage where it was constant on his part and I was getting tired of having to message him every single day (often a few times), but that is my say on the matter really.

I got some new guinea pig pups yesterday. Since losing Tigger, poor Bumble was all on his own and if you know guinea pigs like I do, you know that guinea pigs need the company of other guinea pigs as well as human companionship. They are very social animals by nature and they often become nervous and depressed when they have to live alone. The worst thing about how we lost Tigger was how sudden it was but that's how it happens when an animal dies due to stress related illness (because who wouldn't find the constant pounding of dance music being played at inconsiderate volumes stressful?) and it did leave poor Bumbles feeling a bit traumatised and even now, if he hears dance music he whimpers, which to me as an animal lover is awful to watch.

The new piggies are as usual little balls of amusement, cute and very friendly. I went with my mum and Dave to go and see what they had, we did originally pick out a couple of youngsters but they weren't ready to be sold yet. I had originally spotted a young pup on his own and thought "you are cute" and I was more than happy to take him on along with a slightly older boar (I think hes about 18-20 weeks old, so hitting puberty) who looked just like Scruff or Becky's pig Zell. He has been named Kaiba (a bit of a joke as he has blue eyes and white fur, hes a Blue Eyes White Guinea Pig!). He was a bit funny with Bumble and the younger pup, who is called Yugi (names from the original Yu-Gi-Oh anime, Yugi was small yet strong willed and feisty enough to fight for himself, Kaiba was a rich kid who was a bit of a loner at first but soon became more of a friend to the others and a rival for Yugi) and is a bit of a humper at the moment (there's always one isn't there!) but hes settling down and I caught them all nibbling and snuggling together.

The group already seem to be alright with each other, there was a little scrapping to start but that's a normal thing at first because like any other creature, groups have to establish a pecking order. It's a typical thing for the males to be a bit more feisty about it but it does calm down. I've had pigs in the past who were similar (the exception being Hope who had a tumour in his brain) and it does soon stop. The older pig, in this case Bumble, just has to keep the younger ones in place. Like Tenzou did when he was put with Bumble, Tigger and Scruff. It's a shame we lost Scruff so soon as I wish I had watched him grow, I wonder if he would look like Kaiba does now. I still don't know what happened exactly, he was popcorning around one minute and we found him dead as soon as we got back from the local shop, probably a period of 5-10 minutes or so. Never did find out how or why that happened but Tigger and Bumble, who were of the same litter, thrived and grew so that was a mystery really. Watching the new balls of energy and fluff running around the cage has definitely lifted my moods, even in the shop, watching baby guinea pigs bounding around is something I have always enjoyed. Especially when they come up and wheek to say "hello!!"

I'm going to take the next few days steady as there isn't a lot that I need to do now!

Loves
Wendy xx

From Oddworld with Love

Finally! I got off my backside and re-did the banner for the blog! Well, all I really had to do was change the name after the title but it is now done. Gradually moving everything over to Jordan, just as I did when I changed my name the first time. I am happier now that my name has changed as I feel like it's something of a fresh start as it were. No, it doesn't change much of my situation but it makes me feel closer to my family again and that is what I really wanted the most after all. It does still feel strange but its like when I was getting used to writing Bostock instead of Fullard. Its a bit of a habitual thing and when I get in to the swing of it, that's when I will do what comes naturally.

I guess that is kind of what life is about in a way, getting used to new things and it is good to change a situation to what works best for you.

Don't you just hate those days when you really feel like you've been dragged up from the grave? I have been feeling like this for a few days (since finishing my last course of antibiotics) and well, I feel really rough! See this always happens, I go on a course of antibiotics (usually either Augmentin + Clarithromycin/ Levofloxacin) for a while and after a week or so, things start shifting. The problems begin when I finish the course. For the first couple of days everything is OK and I don't feel too rough but by the end of the week its like being back at the beginning again! It's really frustrating and its like never getting off of the endless treadmill of getting sick, get a little better, get really sick again. Doesn't help that the neighbour and his dance music was making me miserable as well, although the last few days have been quieter (apart from work being done but I can't grumble too much about that kind of thing after all) which has been appreciated.

I've been giving my poor little Bumble-baby extra cuddles and affection recently since he lost his brother. He has been really shy since and every time the music starts, the poor little boy keeps crying because it frightens him. Its a shame because he really is missing Tigger and I can tell it bothers him quite a lot. I have been giving him more attention and feeding more greens to everyone (including myself) which has been a nice change. The cute thing about today was when I was going to the shop, I opened the back door as usual and got a wheeking to say "NOO!! Don't leave us!!" from Bumble and when I returned I treated everyone to some green pepper (yes, they LOVE it) and I think I was forgiven. Although I am a bit concerned that Bumble is getting really clingy towards me, it reminds me why I had to get Patch a cage-mate because he was getting stressed and lonely (then again that time he spent away from me didn't help, Patch was always a bit of a Momma's boy). Today I let Loki (the softest bunny I have ever met) and Bumble have some floor time together. I wasn't testing to see if they could be bonded because housing a guinea pig and a rabbit together is about as advisable as keeping your child in a tank of piranhas (being a lot bigger, the rabbit tends to dominate the guinea pig and bully them out of food, kick them across the cage or peeing on them) but because they both looked like they wanted to come out and play. 

It was quite funny to watch them playing together, although I got an inkling that Loki is scared of Bumble despite the fact he is so much smaller. Although there was no fights or aggression between the two which was a relief for me. I also had a moment where I got to cuddle with Loki who was lying in my arms like a little baby (so cute!) and letting me stroke his paws softly. There are times where Loki has driven us mad (bar biting mainly) but hes a nice bun really. Very sweet and loving.

Its weird, he's been gone for a long time, but out of all the pigs I have ever had, Patch is the one who I had the closest bond with, Hope and Daj were joint second I think. When we first met, I had just lost one of my hamsters and I was in a bit of a mess because of stuff going on at home. I needed something to hold on to and love, and love me back. Zeke was a sweet hammie for the time I had him but he wasn't really the "pick up and stroke" kind of pet that I like. I went in to the shop and he was the last guinea pig. No one wanted him because he was a "Rex" breed rather than a "Satin". When I saw him, I loved him right away. We were both lonely and both needed someone to take care of us. We had each other. When I used to come home from College, I would come in to the entry (back when I had my old place and I lived in an attic) and I would get up the first stairs and I would hear him wheek. Getting louder as I went through the door and up the 2nd lot of stairs. Loudest when I was standing on the small landing between my room and bathroom. It was nice to have someone happy to say "Welcome home!"

I've been trying to keep my mind off things though. Maybe its been because I feel lousy that I have wanted to game more and more. I tend to like to game when I have been feeling unwell because it acts as a distraction. I am not running away from my issues by any stretch of the imagination, but by offering myself a way of not thinking about it, I can clear my head and keep it from becoming overwhelmed by frustration. Sometimes I watch films. Sometimes I draw. Other times, I write or come up with more ideas for stuff. When I do chose to play games though, I find that a game that is enveloping and imaginative will keep me occupied for several hours at a time. It's even better when they remake and revive something nostalgic. If you follow me on Facebook or Steam, you'll know that I treated myself to "Oddworld: New 'n' Tasty", a ground up remake of the PSX classic "Oddworld: Abe's Odyssey". 

The whole premise of the original game was to lead Abe and his friends from a meat factory, get ancient blessings from the local wild  life, oh and fart on command (as a kid, that was the funniest thing about the game). Rediscovered again, it was like being a kid again and I am enjoying it. Although the screams of "I SAID JUMP YOU BLUE BASTARD!!" have been a bit of fun for anyone watching and having to master the gamespeak again (annoyingly trying NOT to make a load of mudokens follow you through electric fences or meat saws). The original games were tough and they didn't spare that to make the new version, one thing I am thankful about really as one thing I liked about the original (as well as the farting and the later game's new skill of fart possession ("No other game has it, no other game wants it") and possessing other creatures as well as Sligs) was the fact that it was not an easy game. If you wanted that "good" ending, you had to really work at it! 

I just hope that they do the same for "Abe's Exodus" which was the spin off of Abe. The original "Oddworld Quintology" was centred around Abe's Odyssey, Munch's Odyssey (which didn't do so well), Stranger's Wrath and a 4th game which never came out (probably owing to the catastrophic failure of Munch). They are making a remake of the other Abe game and I for one will be looking forward to more fun on "Oddworld".

Loves

Wendy xx

Belief?

Ever have one of those weekends where everything just seems to be stacked against you? I kind of feel that way at the moment as I have had a really rough infection which seems to be getting more and more gunky and I am just getting more and more exhausted as a result. It isn't helped when I have to put up with things that others are doing. The only problem with living in flats and underneath another is that there are bound to be times when we don't see eye to eye. It's not a bad thing, its only natural that sometimes we can do things that (without even knowing sometimes) that get on each other's nerves. Conflicting lifestyles and worldviews can be an issue and it is often one that is hard to deal with diplomatically. After all, one person may think that music we enjoy is "that bloody noise" and no party is right or wrong in that. I just wish sometimes people would understand and think about how their actions impact on others.

It's been a bit rough over the weekend because I have had two days running where I just want to sleep and a lot of my medication which is great for pain also has that kind of sleepy side effect (which when I can't sleep because people are playing music is sheer torture) so I can't really take it during the day. The result of this is that I am in a lot of pain and irritable because I am in pain and I can't even do what I should be able to because of the side effects and sleepiness. It can be a bit of a cycle and it gets me down so much at times because I really want to sleep and get better but not everyone sleeps during the day. I totally respect other people's right to do as they please and live the lives they want as long as my own rights are respected at the same time really. It does work both ways and I have always encouraged people to speak to me when they have a problem and then we can come to a compromise and not be at loggerheads. Arguing with people is a massive waste of time and energy. Sadly the stress of the situation was all too much for one of my guinea pigs and despite everything, the poor little guy didn't make it. I was gutted because I watched as his brother was trying to nudge him awake and I couldn't explain what happened as he couldn't have understood.

With the way my condition varies from day to day (some days I can be well and able to survive all day without having a nap or a lot of medication, some days I have to take more medication and am very easy to tire out) and often when I get a flare up like I have been having over the last few days itt can be harder work to just do simple things like walking around my flat or even going to the toilet and back. The problem is that even on my bad days, I do have to try and push through it and I try. I really do try. Even if its just a small win where I walked from one room to the next, its something I can say "Yeah, I did that myself".

I am actually thinking of going in to "Vlogging" or video blogs, as well as a written blog on my progress as things are starting to change and to be honest, I want to watch it go from what it is now to what it could be in a years time, for example because I want to see how I got from one situation to making things work for me again. It feels nice to be back behind a camera (cables and leads all over, different ports, types of cable etc) and I feel more like the Wendy I was. Maybe that person can still come back because she is still here and still giving me a kick up the backside to get moving. OK so the path ahead does still feel uneasy beneath my feet and I am scared that I am just going to fall down at a hurdle and not be able to claw my way back up. A  natural worry for someone like me so I hear, especially when they have already tried and endured so much and yet to keep coming back and saying "OK, that didn't work. What next?" Maybe its a case of where there is determination, there is hope. Maybe that's what I have to believe in for now.

I think its hard having to do all this again and again, being in a hospital and then having every test you've been subjected to before repeated over until you just want to scream! Each time someone new comes in, they have to redo everything and its like seeing a new (or old) consultant is like starting again from square one and that in itself is unbelievably frustrating because its like all those years of testing, jumping through all the hoops and doing everything they said day by day. I know its not going to be easy but it has to be better than how things are now and I have to believe that eventually I can at least get back some quality of life. I just need to believe in myself and not feel like I'm being set up for a fall here. I have had too many setbacks and too many times where I have almost given up completely and I think that part of me is scared of failing which means a bigger failure for not trying in the first place (if that made any sense).

I hope I am ready for this.

Loves
Wendy xx

Leap of Faith?

It's been a bit of a puzzling month with a load of appointments, some were booked ages ago when July was there in the distance somewhere, others were a bit of a last minute thing. The appointment I was stressing over was the appointment at Heartlands Hospital. When I last went in to the Alex, I was told that in no uncertain terms that basically I was going to die. This really messed with my head and I went through a lot of emotions and in effect I had been grieving for the life I could have had. To have that debunked and told that although there has been scarring in my lungs for a while, this was probably more bronchial changes rather than IPF so that definitely took a lot of pressure off both myself and my family (including my friends). The Alex will have a lot to stand up against when I am finished with them because of the physical harm they caused (not to mention the mental strain this put on me over the last 6 months or so).

To be honest, once I got over the initial shock, I was so happy again, everything was bright everyone was happier. Unless you have carried such a thing around with you, you have no idea how difficult it is to have a death sentence hanging over your head or only ever feeling crappy at best. I want to rebuild my life again and its the best thing knowing that there is a future for me. I have a future.

The main thing I have had to take away from this all is that I have had yet more assurance that what I am dealing with IS asthma, it is brittle and is probably going to have some effect over my life for as long as that is. I'm not ready to give up and I think my conviction and genuine wanting to set things right and get things back on track was obvious to anyone who could see. Maybe I expected too much from the initial consultation. Maybe I just want to get better so much that sometimes I wonder if that longing is only setting me up for a fall. A pred detox could be fantastic move because it would mean that we could move on to treating the worst of my symptoms (and what causes them). Its suspected that the worst of my problems stems from the spasm of my airways. Parts of my airway are damaged and I colonised Pseudomonas last winter which really didn't help me at all. If we can get those to stop or at least slow down a bit, I may have a chance of more of a quality of life. I may never be pred free or completely off o2 but as the nurse and doctor assured both me and my mum, if anyone is going to get me halfway back up that mountain, it is Dr Mansur and (as understandably hard as it is) I have to trust him and let him help me and I need to help myself as well.

Unlike previous attempts to do steroid detox, we are backing this one up with objective evidence, close watch of my peak flows and lung function and putting something else there instead. Something less likely to have horrific side effects (my weight is the one I am most worried about, but hey, I'm a woman after all) and I am willing to try anything at this point to be able to not be in pain or gasp for breath all the time. It's a shame we can't fix my back or my joints or I would be even as bold to try and get out of the chair. Maybe one day we will get there but for now, I need to focus myself on things I can actually achieve and work towards them.

What I want to achieve is a more comfortable way of living, it'd be lovely to sleep through the night and not wake up to chest tightness, wheezing and chest infections. I want to make a future with the man I love. I'm starting to believe in that being possible. And the people who know me know that I won't settle for what I can't believe in. The next month or so is probably going to be testing and hard work with appointments to do with my teeth mainly. Basically my wisdom teeth need to get gone and I need the tooth I broke headbutting an oxygen cylinder in the night (not one of my brightest ideas but I was asleep!), not to mention finding a week where I can go and sit and do nothing in Heartlands (a week away from home in a strange hospital in a strange town, I have my reservations but I am going to fight through them and get this over with. At least then it's done, dusted and doesn't have to be done again and again (she says) and hopefully, unlike the last few times I have been in hospital, I will come out having achieved something rather than being left to withdraw and nothing done with it (which the Alex seem to take great pleasure in doing to save a little bit of cash)).

I guess my head will be buzzing over with questions and chomping at the bit to get past it all and hopefully embrace a brigher, less wheezy future. Oh and if I could shift this chest infection I have had now for some time, that would be brilliant as well. I don't know what I feel about the whole thing and some days I am wondering if it really is just me losing my marbles (although I often wonder if I had them to begin with!) or is there even going to be a way we can work around this. If we can work around it, it them poses the serious questions as to why this was never done in the first place and what kind of long term effect has this had on my body and what will put that right? If it even can be put right. I am hoping for some answers to the huge questions and concerns in my mind and I guess maybe I am also trying to have low expectations because that way I can't be too disappointed again.

It's a heck of a leap of faith isn't it?

Loves
Wendy xx

Keeping Busy, Keeping Sane.

One thing I don't enjoy is heat. Summer is one season I don't do well with, heat and my asthma are never happy bedfellows at the best of times but when its too hot and the pollen goes up, my lungs don't like it. I've got to take extra care out and about because if I'm not careful the I will be one more statistic. No one nowadays should die from asthma, but unfortunately because of the way asthma is (or isn't) handled is one of the major reason.

I went out today, I had to get a prescription and a few things from town. I always enjoy a bit of a wander through town and it makes a change from being stuck inside. When I was on my way out, I spotted a familiar face. Because of my condition, I have been regularly seen to by the local Paramedic staff. They have saved my ass more times than I could ever count. This one guy had seen me many times from the YMCA and in my current home. He had placed cannulas in my arms, overtaken nurses and given me nebs and o2 and generally done what I needed someone to do. It was nice to see him and not be gasping. Since being on oxygen, I have been in hospital less. He even said how much better I looked. I never knew how much I would benefit from something that I never thought I would need.

One thing that seems to be an issue is that in my sleep, I knock my cannula off and sometimes my breathing is irregular. It's something to talk to the o2 nurse and the consultant about but there are times when I have to increase my oxygen to keep my levels up a bit. Its not been easy and there have been times where I have wondered why I am doing it but then I see the people precious to me. That spurs me on even when I feel like I can't do it. I don't realise it but I am actually quite strong and I like being able to take control of my own treatments. Whether it's making sure I keep up on tablets and nebulised meds but also when I have to, doing my home IV (although this isn't as common as the other things, I have to have courses of antibiotics IV but doing them at home avoids a trip to the Alex and being able to take care of myself). I think maintaining my independence has been the most important thing and even though I have a little help every day from my carers, I do still try. I try and make sure I have everything, even if it means riding my chair to the other end and getting off to go in to the kitchen.

I think that actually talking to my neighbour about stuff actually had a better effect than anything else. Sometimes I think you do just need to talk to people. Not everyone is unreasonable. Its been great the last few days, nice and quiet and I feel better now the stress is gone. I admit, posting my frustrations publicly probably wasn't the best way but in a way I'm glad I did because it meant I found the person (or he found me) and we opened up a dialogue. Sometimes that is all you need. I'm glad we managed to talk it through and take a mature route around and got a better result in doing so. Maybe people aren't as scary as I sometimes think. But that is good and someone being brave enough to be the first to say, well that has restored my faith in people a little.

It took a few tries to get the prescription through (pred was the sticking point as usual, probably because its something sometimes I need more of it than others, but after explaining it the doctor sorted me out) but it's done now so I can chill for a few days now. Today was so hot and muggy and my lungs really did not like it. I had a period where I was so exhausted that I just flopped and slept for a while. I think it was needed because when I woke up, I felt less dizzy and nauseous. I did make sure that I drank plenty of water as well because dehydration can be a killer in any situation, not just mine. I've been particularly attentive to the needs of my pets as well as they also don't like it when it's too hot.

My pets are well cared for and I take special care to make sure that they are comfortable and their welfare is objective number 1. When one of my guinea pigs had a poorly ear, I spent time making sure that his ear was cleaned daily, drops given to help with the wax and medication given to ensure that my boy was in as little pain as possible. He is doing so much better today and is more like the Tenzou we know and love. He's putting some weight back on and seems a lot better than he was at the start of the week. I really thought that we were going to lose him. Seeing him get better has been so worth it, I have had Tenzou for a long time and he is the sweetest little thing really. He always has time for a cuddle and he thanked my TLC earlier with kisses and as I was giving him his pain meds, he took the syringe off me!! Cheeky little lad! He is a cheeky boy. But he's MY cheeky boy and when he needed me to take care of him, I did. Even though I've been sick myself but that's the thing with me and animals. I have always had this love of animals and compassion for them. I will syringe-feed an animal every hour until he eats himself or sit there patiently with them. Seeing a good outcome is worth it, even if there haven't always been such good endings to the story. As I look around my living room, I smile as I watch all my animals being happy and comfortable.

I'm still working on a few things and will be chasing up leads for the family tree (so far I have managed to get some stuff done) and other things. What can I say? I like keeping myself busy and doing something a bit more productive than sitting around playing games (I do game but I do do other things too) and relying on others to do everything for me. I'm not really a lazy person when it comes down to it.

Loves
Wendy xx

Family Tree

One thing I have been doing recently is having a good sort out and organise. The reason for this is that now I have more and more space available to me, space to spread my wings so to speak and its nice. With the living room being some kind of ad-hoc bedroom space for a while, it was a bit rammed in and busy. No one's fault really and it was a situation that was the way it was because that was how it was. No bitchiness or bitterness or anything of that kind. We made the best of a rather awkward situation and that was the way of it. Natt is my friend and it was a pleasure to help a friend during their time of need. Right now I am having a sort out and getting rid of things I no longer have need or use for. There are a lot of things lying around here. I have always pictured my mind as a desk. A desk can sometimes be cluttered and covered with things it doesn't need to be. This is kind of how I visualise my mind so to me, clearing my desk can mean a lot more than the simple answer.

Its amazing how much clutter just mounts up when you aren't looking. I have a lot of DVDs, games and consoles as well as a rather hefty book collection and CD collection. This stuff is stuff that I have accumulated over the years and some of it does have sentimental value to me and there are things that I don't think I could ever part with. Particularly certain soft toys like my Donald Duck which have wonderful stories about a fantastic holiday.

One thing I have wanted to research for years was my family history. Its fascinating to see how far back I can look and see how my family has grown and expanded over the years. Its something my mum was doing and she has been a fantastic source of information. I like history and it is so much fun to look at where we came from. Maybe one day, a relative will look back and maybe use what we found to find out more. Our time here isn't always long but I like to at least know a bit about the people before. I also have an interest in folklore. When you look at the history of a place you find out a lot. All my years in Redditch, I hadn't known much about the "Lady of the Moat" in Moon's Moat. Her story of love and betrayal and her ghost coming back every year to walk through her home. I find Redditch a rather interesting place, along with my hometown. So any chance to get my teeth in some good history is appreciated. I think a natural interest in the world around you is good and when I couple that with time on my hands, it is a great way to spend some time. So far, I have managed to trace my Mother's family (mainly on my mother's paternal grandmother's side, Edensor) to 1812 and my 5th great grandfather. On my Father's side (concentrating on the Fullard side) to 1740.

Its interesting because talking to my mum, she told me some stories and stuff about the family and what she knew and I shared with her what I found out. I like to think that one day what we've both uncovered will be pulled together to make a complete family tree. And maybe one day, how cool would it be to trace some long lost relatives? I find it incredible that we have roots deep in our history (The Fullards particularly had links with Staffordshire since the 1800's and had other branch families out in Dorset and even some way out in South Africa and Canada) that connect us to so many different places and times. It grows every time I do some more on it. To find as far back as my 9th Great-Grandfather William (the name William seems to pop up a lot in our family history, my dad is as far the 7th William I have found) and his wife Harriet. I also did some digging in to my 6rh Great Grandfather's past. This is just a bite of what I found and something I found fascinating.

William was born in 1787 in Birmingham to his parents James and Jane. He joined the military in 1809 and proceeded to get to a Navy Lieutenant and received a medal in China at around 1840-1842. He married a lady called Ann Parr who was 10 years younger, and they moved to live in Dorset where they had their children. A photograph surfaced as well. This was taken about 2-3 years (or so my search has told me so far) before he died in 1849. I found it amazing as I went through his history and found out more and more about him. I also couldn't help but notice a few things about how they looked. Particularly William who does remind me of my brother Stephen and paternal cousin Nick. It has almost been like getting in to a time machine and going back to see them. I wonder what they were like? This is one good way of looking to the past. Seeing who you will discover and what stories you can find about them is fascinating. In some ways, it can even help you work out who you are as a person. So far I have manged to go back even further with links to India and Canada but I won't bore you all with that. I may also have tracked down some cousins from my dad's side of the family but again, I won't bore you with all of that.

Let's enjoy what I have found for now.

Loves
Wendy xx

How To Survive.

I guess it's true what they say, you never quite know what the next few days will bring and in my case, I am wondering just that. I have no real worries or concerns about much, but I don't like the not knowing. That is what drives me spare and I am currently searching for ways to provide me with some kind of distraction. Not for any other reason than I feel rough and want to just curl up and sleep until its not rough anymore. Unfortunately, life never quite works the way we want it to and I still have things that need to get done before I can worry too much about anything else.

I managed to finish one of my sewing projects yesterday, was really pleased about that because it was something I saw in a magazine and just had to do. It was simple but so pretty and coupled with the word "Freedom" it became a poignant piece. Maybe it is showing my yearning for freedom myself. I do sometimes feel like I am in some kind of "cage" made by my illnesses. I don't like feeling so contained but I have to accept the limitations of my conditions as they are very real and as frustrating as it can get. they have to be accepted and taken in to account. It can be annoying and it can get really upsetting, especially when you are watching everyone you grew up with going on to have amazing jobs, families and living the lives they want to live. Its hard not to feel embittered and jealous of that. It's normal to feel as I do, I feel like I have been robbed of the chance for a normal life and it gets to me sometimes, it really does. But at the same time, I stop and put some perspective to the whole thing.

There are people out there who are, right this second, taking their last breaths, families who are experiencing loss and people being told that there is no hope of them ever getting better. I am not the first person to go through this and unless a magic cure is found, I don't ever think I will be the last. I am not in the worst health ever and there are so many more out there whose problems would make mine look almost non-existent. You just have to get a grip sometimes and remind yourself that:

1. You ARE still alive.
2. Make each day count. Every today was a tomorrow that you were never guaranteed to see.
3. There are no guarantees except that one day, your life will end and you will die. What you do between birth and death is your choice and you can make your life a happy one or a miserable one. No one else can make that choice, even if they seem to, ultimately it is up to you to decide what you do.
4. The "System" or the "The universe" or whatever you think is out to get you doesn't just pick on one person all the time. We are all equal and we all have the same chances as everyone else. It is usually down to how you look at things.
5. Not everything goes the way we want it to. Even if you try hard, you can still wind up in a bad situation if you make the wrong choices, its best to work out what went wrong, put it right if you can. If not then just walk away and not pick at things. Whatever happened in the past was just that, the past and no amount of picking the bones will change things. 

Some people use the phrase "I'm only being realistic" or something to that effect to justify their negative thinking and their lack of motivation to change things. It was Natt who told me to stop looking at that way of thinking and be rational. When people try and disguise negativity with realistic intentions it shows that they are weak individuals who have given up. It's "realistic" to have low expections of life if you don't actually want to make things better. Then there is the people we call "comfortably depressed" who don't try and improve their situation because, hey they get more attention that way and they can't be bothered to work through and make their lives better. They don't want to so they don't have to. I personally think that if there is a chance of recovery, people should fight tooth and nail to get that. Even if it means putting in a little effort. Even if it means that one day you will be well enough to work again. Not that I would mind that so much, actually I really miss being able to earn my own money and contribute to society rather than take everything from it.

I had a good long chat with the doctor and its been nice to actually be able to talk a bit about both my physical and mental state. After a mental breakdown several years ago (and I still have the journals from there which detail A LOT of things that happened), I did some intensive therapy and its good that I finally got to the end of it. The hard part was convincing myself that the worst was over. I still remember that day, I don't think I will ever forget, that I dragged a serrated freezer saw across my arm and watched as it bled profusely in to the kitchen sink. Looking at the scar now, I still remember having it sewn up and crying my eyes out to the doctor, not because of pain but because of how I felt. I remember how it felt to do such a thing and how much of a release it gave me. I have battled on and off with self harm and depression from a young age and there have been times when I have been so very tempted to do it. The scars on my arms remind me of one simple fact though. I didn't do it because I wanted to die. I self harmed because I wanted to survive. I wanted to release the "pressure" and pain in a more effective way than screaming. I am trying to stay "clean" from it because I know I can do it. I know that I have people to believe in me.

I also had my chest reviewed as well. The doctor was worried as there isn't much air movement particularly on the lower lobes of both sides. Its hard to tell exactly what we have going on down there but we know that we seriously need to attack it aggressively and keep at it until we get some kind of result. The problem lies in that my condition is very complicated at the best of times so we are having some problems in trying to get it to get better. Luckily with my Heartlands appointment around the corner, we can get some kind of resolution. The doctor also said that I should increase my oxygen a little bit (which I am not that keen on) just while I am getting over this infection and try and go back to 2l when I feel better, and if I get worse, then go to hospital, even if I have to insist on not going to the Alex. Looks like a few days of rest may be wise for me, and staying indoors where its warm and comfortable. I will beat this thing because that is what I do. It's what I always do.

I'm not a victim. I am a survivor. 

Loves
Wendy xx

Reflections

I'm having one of those more poorly kind of days. I have a nasty fever, my whole body aches and well I just want to spend the day curled up asleep. But these days are kind of normal for me. Its not easy to live with life limiting conditions and there are days when I am better than others. It's just one of those things really. I like to think that I am at least keeping a down to earth attitude towards everything, I mean, I have said it often. I am not the only person, nor am I the last to ever have this happen and I am certainly not the worst out there. I know of people who suffer with worse and they never ever make a peep and people who have no problems at all and complain about everything. I think the balance comes from being, not happy, but accepting of my lot and taking each day as it comes.

Right now I have been concentrating on some unfinished cross stitch projects and getting them finished so they can be enjoyed. I have a fair few that I started and forgot about because other things came up and I am gradually working my way through them. I have some ideas for some projects as well and some designs I am working on charting myself. I find the process really relaxing and when I look at the end product I do feel really proud of myself so it does come to something in the end. I won't spoil too much just yet or reveal all of my upcoming projects because I want to show them rather than just talk about them, because in showing them I can hold my head up and say "Yeah. I did that." There is also a knitting project I must finish as well, and one that needs starting so there are plenty of things to keep me occupied (not to mention non-creative things like gaming, although there are aspects of creativity there as well!) and stave off "cabin fever" for a little while longer.

I don't like to be inactive in any kind of way. Even in my sleep, I am moving around and sometimes I have been known to sleep walk (and do very unusual things as a result, not limited to leaving the house and "waking up" sat by the River Arrow) or even talk in my sleep! Its annoying to me to not keep myself active. My body isn't really as good as it was and I now have major problems when it comes to post attack recovery. Because of how my asthma is, its like I am constantly in the throes of an attack and it is getting harder and harder for me to recover afterwards as my lung function is now only about 30-40% on a good day and even lower on a "not so good" day. So when you look at it, it is kind of a wonder some days that I can even muster the energy to get myself up and even more a wonder that I still refuse to let people do everything for me. Its just my nature I suppose, even if sometimes I forget my limitations and that can sometimes lead to some rather interesting situations. Admittedly, a carer finding me passed out in the loo was rather embarrassing!

Another thing I love doing with Jace is our Yu-Gi-Oh duels. Its weird, back when I used to play years ago, we used to play these weird truncated rules and they just seemed to breed lazy habits. When I duel now, I play to the official rules and regulations. I never realised that duels could be so challenging and the importance of only having a certain set of cards that work well as a chain rather than several cards that may work in a pinch and I found that a 40 card deck works so much better than a 60 card deck (more chance of getting cards that work together and cuts out all the messing around). Another thing that has grown is my confidence and I don't feel like I'm being held back. My recent purchase of the Blue Eyes White Dragon vs Dark Magician mat is still a marvel. I love the colours and the way it has both mine and Jace's favourite characters on, like I am dueling with a piece of him with me.

I guess, even though I have had a bit of a rubbish day with my lungs (they like doing the whole "wait until she's busy and constrict!" thing right now) but I haven't wasted my day. I have at least managed to do something productive and something that brings me a lot of pleasure. Being with someone who loves and supports me no matter what has really been such a positive change and I am looking to keep up with the positivity and I can completely ditch the past and move on with life. Because, that is what I really want to do now.

Loves
Wendy xx

Jumbled Thoughts

When I found out that they were remaking Final Fantasy VII I found it incredibly hard to contain my squee-ing (must have sounded like some kind of wheezing guinea pig!) but it led to one of a few more recent decisions for both myself and Jace. As I say, I am not going to reveal anything yet until I know what's what and a bit closer to the time. My life is going to change and I believe it will be a good thing. I believe that it will lead to our happiness and heck, it may even lead to better health on my part. I am a little uncertain of things, more to try and quell that pessimistic side of me but it is more my concern than anything else. There is always going to be the worries in the back of my mind, (I mean, how can there not be?) but they aren't the lead thought process that goes on. Yes. There is a chance things could go wrong but that is kind of the way with anything isn't it?

When I moved to Redditch I was only 16. I know at that age kids think they're ready for the big bad world and that now they've finished school, they're all grown up. How naive I was. I didn't know what love felt like and I didn't know what it would be like to be hurt more than anyone had ever hurt me before. I never knew how badly my body could betray me and I didn't know much about life in general. I did have to learn the hard way, but I think it allowed me to grow. I don't regret ever coming to Redditch and I found myself out here. There are things that went bad and there were things that happened which ultimately meant that the person I came here to be with and I grew apart. These things happen and sometimes it is a painful part of maturing and becoming an adult. Not every relationship ends with a fairytale. I'm just glad that things with Mike ended before we hated each other, but despite it, my connection to the family is still very close and I owe Mike's mum Shirley a lot because she was someone I looked up to as a youngster growing up to be a woman in my own right.

When I spent a gap year back at my parents place in Stafford, I think it opened a lot of old wounds that I had prayed would have healed. I had to face the one thing that I was running from when I moved to Redditch. I was running from my past and still recovering from something that even now tries to rear it's ugly head. Growing up, I have always seen myself as "the fat kid". I think being told from a young age that being fat means you don't get the same love and compassion that everyone else gets. As a result, after my weightloss from a grumbling appendix had left me a mere 8 stone, I trained myself to think that my body only needed a certain amount of calories and that I should live on 1 meal a day and drink loads of water. At one point, my weight was just 7 stone and when I attended my aunt's wedding, I remember the tears from my nan because the prom dress I wore (which I had filled nicely under a year previously) now hung over my emaciated body. I was taken aside by a cousin that night who gave me a stern lecture and told me to put weight on before it was too late.

After a while I think I did managed to find my pace again and when I moved out of my parents' in to my own place, my first ever bedsit in Ivor Road, I think that was the day I took control and said "This is my life and this is how I want to live." I loved my place and I remember before I moved out, I went out for a little while, just so that I could go back in to the place I had called home for 9 months and just lay on the old sofa, there were a few bits of stuff we hadn't moved, including a kettle, my tea bags and a mug. I got some milk at the shop over the road and I spent an afternoon just sitting there quietly. I've since moved and now I live in a different part of Redditch. I have been in this flat for 4 years and it may be a crummy little place in a crap part of town, but I put a lot of myself in to it to make it my own. It is my home but eventually, I will have to leave it. I know this and it will take a lot of searching in both looking for a new home and in myself to find the strength and courage to get through all this.

I know I won't be alone in this. I know that to be happy, we all have to make an effort. We all have to do things we aren't sure of to start with but when we just make the leap of faith, it is worth it. I have asked myself questions over and over and have realised that Redditch and I are probably going to say goodbye to each other. I am sad to plan on leaving Redditch as there are some people here who have made my life so much fun and I will miss the friends who are like family to me. It sounds silly but when I leave here, I am also leaving someone else behind, but he can't follow me where I go next even if there is a part of me that wishes I could hold him one last time. I am talking about my Patch. Its been 3 and a half years since he left but whenever I went to the corner of the garden, I know hes there. I know he would be telling me to keep going in the way he did and he would want me to be happy.

I know people say that "it's just an animal" but my pets are never that to me. Patch was my friend. He was my confidant and he often tried to be my nurse as well. From the early days of when we used to both curl up together in my bed at Ivor Road, especially that winter when it was so cold inside and outside. To the days spent with him on the sofa behind me, just nibbling his hay or coming for warmth and love. It's true, not all friends walk on two legs, but we all love with one heart. Pets are like angels who only come to us when they know they're needed and when they leave us, they know that they did what they were put here to do. I'll never forget any of my animals and when I do move on, they will be a part of that and I will move with them (although I am hoping to rehome the rabbits to be honest so that they can have better lives).

As for now. Well I have to keep fighting and keep trying to move forward. I had a call this morning and to be honest, I am still so angry that I'm shaking. Even the woman on the other end of the phone was shocked at how the medical directorate had tried to sweep this under the rug. The thing is, I refuse to let it go under the rug and I refuse to stop fighting until I know that this will bring about the most important thing of all, change. I want to change how some doctors perceive my condition as it has been well documented that a good number of doctors refuse to take asthma seriously. The problem with this is that so many people die because their attacks were never really dealt with properly and 90% of them could have been avoided. This still kind of scares me and its only now that I am coming to terms with everything else around me that the gravity of my condition is well and truly the scariest thing I have had to work around.  It's probably my biggest hurdle.

Over the next month or so, I will be undergoing more tests, assessments, reviews and other things to ensure my best care for the next year or so. I don't know exactly what happens now. Maybe we can fix a number of smaller issues and then the bigger ones can be dealt with in a more effective way. Fixing the perforation in my septum and the deviation will get rid of that constant nasal congestion I seem to get on the right side of my face. Remove the wisdom teeth that rub against the side of my cheek and cause painful abrasions. Sort out all my organs so that they all work in harmony again, rather than me feeling constantly like I am either going to be sick or in so much pain that I can't really eat or drink comfortably. If I can make my body easier to cope with and less painful, perhaps then I can improve my chance of survival and possibly make sure that I can keep on living after its all fixed and sorted.

Its been a year since I found out the true extent to my disease, I just didn't take it in until April time. Maybe its because at my age, I want to plan the next fun thing to do, not have to worry about the people who I care about and when I do eventually have to leave them behind.

Loves
Wendy xx