For life's little ups and downs.

A rather quirky, funny and sometimes daunting look in to the life of someone who has a lot of health problems but does their best to keep positive. Punctuated by guinea pigs, anime, superheroes, transforming robots and cross stitching.

I started this blog to tell my story, about who I am and what I do. On top of the health problems and raising awareness for those, I also use my blog as a way to help promote other causes, particularly ones which affect the most vulnerable. I live with a number of different and complex health problems but I refuse to let anything get me down. I know how it feels to be discriminated against or thrown aside. This is me. This is my life. I live it and do what I want with it. Nature sets the limitations. We set the boundaries.

About Me:

A blog about life. I live with Type 1 Brittle Asthma, Bi-Polar Disorder, Obsessive Compulsive Disorder as well as Various Allergies, Neutropenia, Crohns Disease (my IBS was rediagnosed as Crohns), Osteo and Rheumatoid Arthritis, PCOS and Osteoporosis and Heredetary Spastic Paraplegia. I have recently also been diagnosed with Sleep Apnea (which makes me stop breathing in my sleep) I live with these conditions, but I refuse to let them keep me down and out. I still try and make the most of my days despite being so poorly and having to rely on my wheelchair, nebulisers, nearly 50 pills a day and 2l/min of oxygen and CPAP.

I'll flap my broken wings and erase it all someday... You'll see.

Sunday, 28 June 2015

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.

Wendy xx

Wednesday, 24 June 2015

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. 

Wendy xx

Tuesday, 23 June 2015


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.

Wendy xx

Monday, 22 June 2015

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.

Wendy xx

Wednesday, 17 June 2015

A Brief Respite.

I made a heck of a trip over the weekend, well, its one I have done a few times and I actually kind of enjoy it sometimes. I went to Blackpool to spend time with Jace as we are trying to make this more of a regular thing, the whole seeing each other and spending time just being happy. Its nice to have a good enough grip on thats happening and what my body needs so that when I do travel, I have enough of everything with me, in a kind of mobile pharmacy or something like that. Obviously, I always carry copies of relevant paperwork and a repeat prescription (just in case I need to let any medical staff aware or say if for some reason I was ever searched as I carry CDs with me). I also have to make sure that I book oxygen, cancel carers and make sure that my furry friends are taken care of.

Obviously as well, when I do go out places, I like to make sure that I have booked things like tickets and assistance where possible because it makes the trip all that much easier. Usually at the station this is in the form of someone coming to meet me, help me get off the trains and on to my connections. Yesterday I was upgraded to 1st Class because they had already got someone in the wheelchair spaces in Standard. I actually really liked it and can see why some people prefer to travel that way. Free internet, a snack box (which has some really tasty stuff in) and a hot cup of tea are just part of the service. I traveled from Birmingham New Street to Preston in comfort so it can't be all bad! I, as usual, gazed dreamily out of the window, in my own little realm where I was listening to music and just taking in the world as it rushed by (mostly up through fields and railway sidings) and mulled over the days before and the days ahead. One major perk with being out here, well beside the obvious of getting to spend time with Jace, is that I am away from the usual crap that I have been putting up with.

Yeah... that guy upstairs is getting worse and the council are still dragging their heels and he isn't engaging with them to resolve the issue. The problem is that when the two upstairs flats start a noise war, I am stuck below them both and have to put my own music on so that I don't have to listen to it. Obviously I enjoy my music but I don't like bothering other people with it. I thought that perhaps we had come to something of an understanding with "if I keep mine down, you keep yours down." kind of agreement. But this guy isn't playing ball and he is acting like a teenage brat (despite looking and probably being a lot older than I am) and the lady on the other side seems to just fuel it. I am going to make sure that this ends sooner rather than later because I don't think it fair that someone can make another feel that way because they think its their right.

The problem is that unless you have dealt with this situation yourself, it is hard to explain how miserable it can leave you. When this starts up, it often wakes me up (I don't sleep so well when I have a lung infection which really makes it worse) and has started earlier than 7am before now. Obviously if it's been a bad night then I only get something like 4-5 hours of sleep and sometimes I even get less depending on how much junk is in my lungs. So I get woken up and whenever I try and get some rest to try and get some energy back, it starts up and disturbs me again. Sometimes this happens regularly for periods of time throughout the day, despite him trying to say its occasionally for under an hour (this guy really tried but we got evidence that proved him to be a liar). It's been quite maddening and I am not surprised that while I sit here listening to the waves and birdsong, I feel calm. For the first time in days I am calm and contented. I'm enjoying this feeling and the peace around me is doing me some good. At least that's what I think anyway.

When I left Redditch on Sunday afternoon it was grey and wet. I arrived here in Blackpool I caught one of the most magnificent sunsets I had seen in a while, the sun setting behind the rollercoaster, almost making it a silhouette. I had to capture the shot before we headed back to Jace's place. I didn't do too badly on the stairs to his room either, well I did OK for me, desaturated to 90% on 4l but got my breath back carefully. I felt better after having a rest, some meds and then settling in with Jace for the evening. I have started a few things rollng so hopefully I can reveal more pretty soon but this is going to make me happy if we can do this and it could spell improvements for me in more ways than one. I had a nice time there, but I always do. Jace is more than able to (and willing) assist me when I don't feel well, I had a fever on and off during my time there but Jace was kind and gentle and helped keep me cool and encouraged me to sleep if I needed to.

In all, I am really happy right now and nothing or no one will be able to change that or take it away from me. Purely for the reason that I won't let them.

Wendy xx

Tuesday, 9 June 2015

A Year Ago...

I never realised just how much better things have been over the last few years. Admittedly my health has taken a huge nosedive physically but emotionally, its great because for the first time in a long time, I don't have that angry voice in the back of my head telling me that no one can be trusted or that what I went through was right. There are things that I wish I hadn't done and choices I made but I can't go back and say to myself "no, don't get involved with them." or "that is a BAD idea". Hindsight being a wonderful thing and all that. I can't waste my life on regrets.

The most daunting things I faced over the last year were the cold hard facts of what my condition is and what it means. I looked at "Timehop" this morning and almost cried when I realised that it was a year ago today that I was told that I had pulmonary fibrosis as a complication to what was already very severe asthma. I didn't really take it in at the time, probably because I didn't want to see what this really meant. My disease progressed to this stage a lot quicker than most people's and it isn't a common thing for someone my age to develop. We didn't know then, the extent to the damage was only discovered in April this year when I finally got a repeat LFT done, but this was going to be, and has been, life changing.

In April, I was told that even though I was very poorly, this was going to be my best. My best is on oxygen, unable to walk very far or do very much, exhausted and in pain. I think that once I had finished being angry about it all, and trust me, I was very angry because it could have all been avoided had a certain consultant done a better job, I remember crying so hard that I wanted to scream and Natt had to restrain my limbs because I just wanted to break things and scream and shout until what little energy I had was gone. I cried myself to sleep that night and didn't really leave my bedroom for nearly a week. The truth was, this whole thing broke me in a way that I didn't think I could be broken. I started asking myself serious questions and wondering what "quality of life" really meant to me and started to look up options for the easy way out. I remember that moment I broke the news to my mum, I couldn't bring myself to say it at first, how could I? But knowing she was there and ready to help me fight my corner along with my friends, family and Jace. I was overwhelmed by the fact that so many people had come together to support me through this.

So many people forget that just I'm young that an illness can't do what it can do. I have had people look down their noses at me because I am in my 20's and am in a wheelchair while at 70+ they were still on their feet. People giving me dirty looks and rude comments because I was seen before them in A&E. People shouldn't judge what they don't understand. I didn't want to be reliant on medications and oxygen tanks before my 30's. I didn't want to need 6 pages of medication or to need care daily. I've been denied things that would improve my life (like having a shower installed in my bathroom) due to my age and I find that so frustrating. I'm only a 20 something after all and that seems to be the only thing that people see. If I was a little old lady, I would have everything thrown at my feet regardless of need but I'm not so I have to just do what I can with what I have.

Maybe I should celebrate, every year is another year I survived. I'm trying to think that surviving and living on when so many wouldn't have been able to, is better than thinking that its another day closer. I go in to hospital knowing that one day, I will go in and won't come out and that does scare me because who wants to face that? I know my family, my mum and my aunt particularly, are scared that something will happen but they know I love them and I won't stop trying as long as they're in my corner.

A year ago, I was told that things were bad and that we didn't know exactly what or how things would happen. It could have been the end of me, but you know what? Uncertainty has been the making of me. 

Wendy xx

Sunday, 7 June 2015

Sunday...bloody Sunday....

My flat is starting to look and feel how it should again. It was to sit and chat with one of my carers and he commented on how he remembered the place years ago and how it once again is filled with colour, light and space. I love the feeling of open space, it helps me feel less cabin feverish. I hate clutter. It makes a small room seem even smaller. I know that I can't just throw caution to the wind and go out on a whim. My home isn't a prison by a long shot, but it's a place I spend time as I have to do an array of treatments every day. 

One "treatment" I do is art therapy. This is either by drawing or just simply colouring in. This can be liberating as there are no rules and you can just express yourself and let the colours just run with your thoughts. I find art calming and it helps me work through my emotions rather than letting them fester and become dangerous or scary. Having mental health problems can be scary, confusing and hard to comprehend the world, especially when you struggle with communication and social situations. Being autistic doesn't mean that I'm stupid, in fact its quite the opposite, it just means that I find social interactions confusing.

I think the hard thing now is trying to lure myself from the bedroom more. Its a gradual process as I am used to being in there day and night. Making the decision to not eat meals in there and soon moving the TV and games consoles back out. I decided that ultimately I won't need a TV in the bedroom. If I want to watch something in bed, I can use my laptop, to be honest if I can just use the bedroom to sleep then that's better for me in the long run. My living room is comfortable and I can and have already proven I can nap in there if I need to. Comfort is an important thing to me.
One thing I have managed to get is a purple curtain for my back door, its similar to the black ones I gifted to Natt, same fabric, just shorter and purple. The idea being that my home is uniquely mine. I'm so used to it being me and another person so it has to be decorated to both of our tastes and even the closest of friends can have different ideas of taste. What one person likes may be completely different than what I like. For example, I like light and open spaces, Natt like darkness and closed windows. Everyone has their own tastes.

I'm liking being able to come and go as I please without worrying about waking anyone up. In the same way that tastes vary, as do peoples lives. Natt is nocturnal and does a great deal of work at night. Its how he lives naturally and it works for him. I'm more of a daytime person and don't like getting up late or having to sneak past someone sleeping to go and do my usual things like going to the shops or getting errands done. Obviously, now I am getting things done and I'm working towards what I need to. Living with Natt was a fun experience but I think it would have destroyed our friendship had we not been so close. Living with someone else can be tough because you see that person every day, you learn their habits and there are some habits that drive us mad! 

I spoke the other day with my mental health team and they have come to the same conclusion that I came to. The way I'm feeling isn't my mental health breaking down again. The problem is that my physical problems are stressing me and how I'm feeling is only natural for someone whose been given such news and they feel that the doctor should be doing more to help me with my illness and make me more comfortable rather than automatically going down the mental health route. Once a mental health diagnosis is made, it is common for a lot of doctors to try that route first. I find that frustrating because I know my body and after living with it for as long as I have, it can still be hard to get someone to listen to you, but next month is an appointment with my consultant.

This is where we start with asking the questions about transplant and whether or not that would improve my health and quality of life. People ask me what that means, for me, its simply being able to do what I want to do and achieve the stuff I try to achieve in my day. Not to have to worry about how full my oxygen cylinder is or whether my conserver is going to run out of battery again. It is all simple stuff really but it is the stuff that bothers me the most. Having to do treatments and therapies, deal with side effects like drowsiness and effects on my short term memory (lorazepam is particularly bad for that) or concentration. It will be hard to come off some of my meds (like morphine for example) but if we could get me to a state where they weren't needed and I had the right help when I needed it to come off them that would be the ultimate goal. Its a bit of a pipe-dream right now as it just isn't possible or advisable for me to stop any of my meds. We did a little MOT when I was in over Christmas and made sure what I was on was working, taking me off what wasn't and changing things around a bit, that helped a lot and as a result we managed to optimise my therapy and make it better all around. 

I just have to make the most of things for now. Enjoy the good days and weather the bad days. Just got to keep a positive attitude towards it all and keep reminding myself that this can't be a forever deal, there has to be something of a glimmer of hope, even if its going to take a lot of work. I don't mind working towards a positive and bright future. I never was opposed to working towards something I want. And I want this so much, I want my life to get better. I don't want to stay as I am because at my age, it isn't what is right for me. I am only just growing up and seeing the world around me and I want to make the most of my time. I was talking with Natt earlier and I admitted to him that I never really asked myself how I felt about being as I am. I do feel scared but I hid myself from others because maybe in my own way, I felt like I was protecting them from the harshest of realities. I mean, who wants to admit this kind of thing, especially to family and friends. 

I'm not just having problems with my lungs either. There are also problems with my stomach and IBS flaring up. I can barely eat a meal without feeling bloated and uncomfortable, kind of like stomach cramps. This means that I don't "go" for days or when I do, its not fun. Earlier I was actually having my asthma play up while I was trying to not flop from tiredness. It can be hard work when your body decides that its all going to rebel all at once and I think that was what happened. By the time I managed to neb, get back to the sofa and recoup, I was almost ready to get up again! This is just another thing I suppose.

Wendy xx

Friday, 5 June 2015

Pushing On

OK, so I have been cleaning almost non-stop since Natt moved out. Doing as much as possible every day and now I have my nice clean living room to show for it. It doesn't even look like the same room any more. It looks and feels like the living room it used to be again. I realised just how much I had missed that, but at least I had managed to do the one thing I had set out to do. I had looked after a friend when he needed me. OK it was a bit awkward for both of us some days but it really did show how good a friendship we have (well, even afterwards we can stand each other so that's always a plus!) but this is a friendship that is 10 years old.

I've been living in my flat for some years now and I really actually like it. OK so it's not a palace or a show home but it is a home. The walls have seen days of happiness, sadness, and anger and it has become of the few constants in my life. Its weird that I think of when I first moved back to Redditch and my first ever place, to the hell that was the YMCA and then finally settling in here. I was unsettled in the YMCA for a lot of reasons. I hated it. I still hate it. I don't even think that the Knowle Close side of it should even be standing as its poorly built and even more poorly maintained, and for the rent they charge as well (last I heard the rent was £120 a week which is nearly twice what my weekly rent is in a place that has 2 separate rooms, bathroom and kitchen) its appalling. Then you bear in mind that the YMCA is a "charity"? That makes it worse!

My place is quite a peaceful little place. My living room is where I spend the day with my animals, unless of course like earlier, I was so exhausted I ended up flat out for ages and woke up to go and do stuff. I try and keep a contrast between the rooms as it is better for me mentally to see one room as my entertainment space and one room as my sleeping space. I have stopped having meals of any kind in the bedroom (eating in bed is probably the worst thing you can do for yourself) and I'm not afraid or ashamed to use my chair on my bad days to convey myself around my home. Sometimes I think I tend to keep trying to do things when I really shouldn't and don't always remember that I can't judge myself by my old standards. I have to live to new ones instead.

This doesn't make me lazy or mean that my home has to suffer. My home is important, I have had to nest here in my own way and make it what I want it to be. I replaced the old blind that was broken (partly when I slammed the door in anger during an argument) with a curtain. It allows me privacy but at the same time, can be opened to let light in. Privacy is one of the most important things to me. I don't like being out in the open when I don't want people to see parts of me that I don't like. I don't like having to face what I have to face but I do believe that it has made me, at least emotionally, stronger.

The biggest challenges are the ones which are the most worthwhile, I didn't believe that before, but I do now. I could have fallen apart, heck I probably let myself fall apart at first and I needed to cry it out and work through it my own way. Once I had figured out my own mind and got my head around it, I was then able to process everything else. It was down to just working out what this all means, I mean you don't get a course of "Asthma 101" or "How to live with Pulmonary Fibrosis" before it comes a huge factor in your life. You have to live with what you have and accept that your life with this condition is what it is. Call a spade a spade.

Well today, I had a little "adventure". Basically I use a machine called a "Conserver" with my oxygen and that runs on a C cell battery. They need changing every couple of weeks and when it goes dead, my oxygen just runs freely and as a result, that can waste 2/3 of a cylinder because I only need oxygen released when I take a breath (which is why when I breathe you can hear a clicking sound) and the conserver can make a tank last up to 15 hours. I thought I had a spare around here, I think its somewhere but I have no idea where that went as everything has been a bit topsy-turvy over the last few days. So I went out to the corner shop, got a cheap battery to last me the trip to get better batteries and then up to Sainsburys. I then sat and thought, "I'm up here, may as well get my prescription." so I went and did that as well. Topped up my gas, electric and TV licence so that I have everything I could want and need over the weekend to go in to the next week. So, I'm pretty much set until Tuesday at least.

Since switching from two separate suppliers for gas and electric to one supplier and smart meters, I have found my gas and electric costs are so much cheaper. The thing with smart meters is that I can top it up any time and even do it via text or over the internet and it all updates automatically so I don't even have to touch my meter boxes. I have a little console that tells me what I'm using and when and how long I have left. It's so much less stressful and means that I can make sure my home is heated and electric is on at all times. The supplier, Utilita, are cheaper too it seems.

So, all in all, everything seems pretty much as it needs to be. For now at least!

Wendy xx

Tuesday, 2 June 2015

TV Thoughts.

I was watching TV last night and a programme I watch called "Benefits Street" came on. This is a programme that, since it's first series aired last year, has been subject to huge controversy and it fuelled the fire of the debate in to the UK's dependency on the welfare state. There have been various different documentary series and debates on how the UK benefit system should work and often, they showed just the "typical" benefits claimants who just cheated the system to avoid doing a day's hard work. It can make for infuriating watching sometimes.

The typical portrayal of a young British person who claims a benefit is that of a person who lives in a filthy council house or flat. They're shown to take illegal drugs, drink booze all day and generally not do a lot while the taxpayer picks up the tab. No one seems to note that this probably only shows a small proportion of benefits claimants. We hear all the time about how people commit benefit fraud or families that just keep growing to maintain and grow their wealth and status symbol. Often shows like this show families who have to sell everything they own just to get by, usually due to substance abuse, mental health or criminal pasts.

It's often a very biased view on "life on the dole" and it often forgets to show the people who have done everything in their power to find work but couldn't get anything this week. People who had to make the choice of whether to heat their home or feed their kids and those who have to live on next to nothing due to unfair and inconsistent sanctioning of their payment. Fair enough if someone on Job Seekers Allowance (the clue is in the name here) hasn't bothered to look for work and they have violated their end of the contract, but making people go in to the Job Centre on a daily basis to sit and use a computer and then when they have an emergency come up (say the illness of a family member) and can't attend, they then have to live on £30 a week or even have no money whatsoever. I think that the benefit system is vastly overbalanced and they need to make a decision on what constitutes a sanction and what doesn't and this should be consistent throughout the country.

Most of the people I know are on benefits of some kind. I am on Employment and Support Allowance and Disability Living Allowance myself. This is not because I choose not to work. This is because I can't work due to my health problems and the fact that I am pretty much unable to judge my condition from day to day. This can be really annoying for me as it is hard to have a normal social life and I do spent up to 2-3 weeks in hospital when my asthma flares up too much. It's not something I am choosing for myself. It isn't something I can really help. It is just the way it is. I would have loved to have been able to work and was gutted when my "dream job" came up about 6 months ago but I wouldn't have been able to take it due to my conditions. I guess my blog is the closest thing I get to publishing my work at the moment, but I do find it humbling when I get positive feedback.

One thing that really got me this time around was the relationship with one lady and her disabled son. He was shown daily love and compassion by his mother as well as the other people in the community, because it is true that people make a community, and when he slipped away, everyone came to pay their respects and show their love. I think that nowadays where people don't sit around and socialise the way they did 20 years ago (I remember when I was a kid and my mum and all the other mums in the street used to get together and chat, in and out of each other's houses and the neighbours were like an extended family) is a shame. I think that it would be great for everyone in an area to get together and help each other out. Around where I live, I do try and sit out in the garden when the weather is nice with the animals out. If the kids are good, I will let them come and see the animals as well and that is enriching for them and for the animals too. My pets tend to be very social creatures anyway and they love being picked up and cuddled.

I love my home, and I feel more and more happy as days go on and I venture out in to the living room more and more. It's weird that I have all this space again and I am sat here wondering what on earth I am supposed to actually be doing out here!

Wendy xx


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