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.

I started this blog to tell my story, about who I am and what I do. I live with 2 mental health problems as well as a disabling and sometimes painful physical problem. 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:

I am young, caring and a very smiley. I have a lot of wonderful people in my life and these keep me going through the best and worst of times. I live with Bi-Polar Disorder, Obsessive Compulsive Disorder as well as Type 1 Brittle Asthma, Various Allergies, Neutropenia, Chronic IBS, Osteo and Rheumatoid Arthritis, PCOS and Osteoporosis. 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.

I went through hell due to bad diagnosis and poor clinical care, and I suffered a lot as a result. I do my blog to tell a story of hope and how a heart full of pain and sadness can find a beautiful light inside. I agreed with Cissnei in Crisis Core when she said that "Wings symbolise freedom for those who have none". I have always dreamed about having a pair of wings and being able to fly away from all of the things that hurt me in life. Sadly many times my wings were clipped or even pulled away and I was left with nothing.

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

Friday, 3 July 2015

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

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.

Loves
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. 

Loves
Wendy xx

Tuesday, 23 June 2015

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

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.

Loves
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.

Loves
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. 

Loves
Wendy xx

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