For life's little ups and downs.

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

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

About Me:

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

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

Friday, 13 December 2013

Long Overdue Update

I've been away for a few weeks in terms of blogging, maybe it's because there has been so much going on around here that I have found it hard to keep up with and just needed a few weeks to clear my head and get through some rather difficult days. No one ever said that life was supposed to be easy and it is true that if we want something we have to pay for it in our own effort, blood, sweat and tears. I think I may have shed my share over the last few weeks and basically I am still kind of reeling from some of it.

I'll start with something good because its always nice to have something positive to talk about. My bunny, Riza, gave birth to her babies 3 weeks ago today. There were no complications or problems although there was a baby that was smaller than the others and was born sadly dead. We think that one was the runt of the litter which is a shame really. The other 6 kits are doing really well and I have possibly chosen the one (maybe even 2) that I would like to keep. Once they're old enough the others will  be going to new homes where they will live lives of love and friendship I'm sure. I call them all "little fluffies" because they are all just fluff and are incredibly adorable. Riza has been a terrific mother and has actually become more social since being a mother. Things are going well and it makes me feel warm inside to know my animals are happy and healthy. The guinea pigs are all doing really well and it's amusing to watch Phoenix and Miles run around the cage, barely able to contain their happiness!

Unfortunately my health hasn't been as fortunate and happy. Since October last year, I have been getting almost constant chest infections in my lower right lobe. Basically the other day, the doctors couldn't hear anything low down on that side and I have yet another pneumonia blooming down there. It's not something I am happy about admittedly but it does explain why I have been so tired, apathetic and my appetite is lower than usual. We are at a loss on where to go from here and there could still be a risk that I could end up losing that part of my lung if it becomes more hassle. This worries me a lot because not only could it affect my breathing big time, but it is a HUGE risk for someone like me to be put under an anaesthetic as respiratory depression could become a huge issue for me.

I have managed to have my Gastroscopy/Colonoscopy procedure. Basically these are highly invasive procedures so I am a glad I was sedated and only remember some parts because I really wouldn't want to remember the whole thing! The things I remember were going in to the room, lying on my left side and having Sephy lying on my right side and the nurse making sure I kept hold of him! I also remember when the scope hit my gag reflex and I started being sick everywhere. Not pleasant and I think they had to give me more sedation as a result! I then remember waking up still in the room, wondering why I was wearing an oxygen mask and not the nasal cannula I had fallen asleep with and being taken to the ward to recover, a nurse worrying because my SATs were low and having the mask strapped back on to my face, I fell asleep for a while before I was allowed to go home. Natt stayed overnight with me to make sure I was alright and not a danger to myself. I think I spent about 2/3 of the day sleeping.

Natt has taken over as my carer full time and he's doing a really good job of it. He really comes in to his prime when it comes to overcoming my stubborn nature. I don't know what happened or how exactly, but on Wednesday, I was really sick and needed help and he overruled my "I'm fine..." routine and got the paramedics in and me taken to the hospital to get treated. It wasn't particularly nice, but while I was coming round, having a game of Smash Up really entertained me and made me forget if only for a little while that I was there because of my health. I think I have slept better these last few nights after being treated than I have in some time. Its a pain in the ass at the best of times, but I know and am confident in that when the times comes, Jace will be more than capable of taking over and he'll be great at the job.

My relationship with Jace just seems to go from strength to strength, despite any obstacles we face, we love spending time together and when we get that time, it really means something special to me. Even if we just end up sleeping or watching TV, that's OK by me. As long as he's there and as long as I can cuddle up and kiss him and feel safe in his arms. He brings out the best in me and I am confident enough to smile and be myself again. Simple, I'm happier than I have been in a long time and nothing can ever take that away from me.

Sorry for delay in posts, I will be getting back to normal with that soon. I promise.

Loves
Wendy xx

Friday, 18 October 2013

Uncertain Times.

It’s been a bit rocky over the last week or so. I have found out some things that actually I would have rather not known about as well as sustained quite a sad loss which has been felt throughout the house and even to others who knew. It’s times like this that I try and turn to my instincts or ask “The Big Guy Upstairs” as to why all this happens and what I should do next. Sometimes I can find an answer. Others, I really struggle and it can leave me feeling very torn and confused. The truth is, I sometimes have a hard time in accepting that bad things can (and often do) happen and there is often not a lot we as people can do about it. Some people really come in to their element when they’re upset or hurting and will just let everyone flock around sympathetically and they’ll get through it. I, however, am the kind of person who internalises everything. I always believed that there was a good reason that they were called “My Problems” and that was because they were mine and mine alone to deal with. I think it’s a bad habit of mine to push how I feel aside and do what I can to help others instead but the common result is that although someone else has their problem tended and helped, I am sat still puzzled and trying my hardest to work out how I feel about everything. I’m not an openly emotional person, but Thursday was one of those times when I really opened the floodgates and I really had to scream and let it all out.

I have always said that the hardest part of being a pet owner is the time when you have to say goodbye to them. It’s something that, throughout my life, can still call up some real surges of deep sadness and emotion. You never get used to pets dying and even less do you feel the pain of such an event. I feel it the same way now as I did when I was 10 and my first ever guinea pig Sniffy passed away suddenly and it’s no secret that I do get very emotional when it happens. I cried when Alphonse died, I cried for Hope and I cried for over a week when Patch left this world and I did cry for Zell, Nero, Gizmo, the rats and even Gatsby (even though we only had him for a week) and Edward. I just didn’t think it would have hit me as hard as it did.

Kadaj was getting old and he’d had this on and off cold for over a month now (sometimes he really seemed to throw it off, others he was just not himself at all and I nursed him through as best as I could) and I think it was strange that he wasn’t interested in the cucumber and tomato that I was giving out yesterday. I had been planning to take him to a vet to get him checked over, but sadly he just couldn’t hold on anymore. Guinea pigs aren’t very easy to look after when they get sick and usually by the time they show any real signs you’re already past the point of no return and there is little, if anything, you can do for them than make them comfortable and hope that they either pass in peace or can wait to be put to sleep. I’ve done the whole having a pet put to sleep, it’s probably one of the hardest things I have ever had to do. That walk from the door where the vet was standing ready to set my Alphonse free to the door where people were waiting for me, felt like it had extended to about 10 miles and I don’t think I have ever felt so powerless and so guilty in my life. It’s not easy when you know a pet is ill and dying. Patch died in my arms and I felt him go, I think that was another time when I just wanted to stand up and scream at the top of my lungs about how cruel life is and how painful it is to love. I found Kadaj this evening, I had gone to make something to eat and felt the room seemed eerie. My instincts were to check Kadaj right away because I couldn’t see him and Miles and Phoenix were being unusually quiet. I think my heart sank when I brushed the hay and newspaper away and found his body lying there. He’d probably only been gone for about 15-20 minutes but everything about my boy was different.

Kadaj was always a spirited little fellow, from the moment I saw him in the Adoption Centre at Pets at Home (under the name Marley, he was about 5-6 months old) and our eyes met, I knew there and then that I wanted that creature and I flat out refused to leave without him after hearing about his terrible ordeal. Originally Kadaj had belonged to a person who owned reptiles and they had only gotten him, and I think one of his brothers, to use as live bait. I’d not long had Gizmo and Hope and I remembered seeing this nutty little tortoise-shell with a mottled face in the pen with them as well as another young boy. I don’t know, nor do I think I want to know the fate of the other guinea pig, but I knew this little creature needed me. He needed someone to love him and show him that not all humans are cruel and depraved and I was already feeling raw about Alphonse, despite having Hope who was blind and deaf and relied on me heavily anyway, so I had him and I raised him. Yes he was sometimes a naughty little thing and he didn’t shy away from a scrap with some of the other pigs (not to mention his “Barbering” incident with Gizmo), but he was probably one of the most loving guinea pigs I had ever known. He wasn’t stupid either, although he wasn’t really a wheeker, he had his own way of getting my attention by bounding around the cage or standing up on his back legs before rolling over backwards because, let’s face it, he was a chunky boy and was probably one of the most food motivated pets out there. He had a good life here and was loved and well looked after. He seldom bit people unless of course you were winding him up, but most of the time, he was happy enough just to have a big pile of hay, a bit of veg perhaps a good lap to snuggle up in to. He will be sorely missed by all of us here, especially the youngsters who spent most of the evening looking for him and wheeking as if to call him. That in itself was heart breaking because I knew how much of a bond those little mites had forged with Kadaj over the last month or so.

I suppose what has been happening with my own health has also come as some kind of a shock. The problem is if we had started looking down this path sooner, I could well have been back on track by now, not a year later and it’s still not completely resolved. I have been having an almost constant run of chest infections which haven’t really responded to the various kinds of antibiotic medications that have been thrown at it. The problem is that this infection is probably caused by fungal spores which come from rotting organic matter (I.E. cut grass not cleaned up, fallen leaves and other things that normally we would come across and not have a problem with, but as I am immune-suppressed due to prednisolone use) and if we can’t shift it with antifungals and get the right lung’s lower lobe working properly one possible outcome may possibly be facing surgery to remove the failing lobe and a long hospital stay. To be honest, I have enough of an issue attending in A+E and staying overnight, being there for days while I recover just makes me feel uneasy. I have so many worries on how this could turn out. It’s kind of scary to be honest and I worry about what kind of future I look forward to, for myself and Jace. I think I need to get through the hardest part of it and keep trying to kick this off with medication. We are keeping up with antifungal meds and Lorazepam for the pain (as well as helping the distress of the pain, it helps to relax the sore and overworked chest muscles that have been making my whole body feel like it’s working too hard.)

I have another set of worries healthwise and this one is a bit more looming as it could well mean a stay in hospital in itself. Because of my gastrointestinal problems I have to be admitted to the endoscopy unit soon to have a colonoscopy and gastroscopy. I’ll be heavily sedated for this and I have no idea how my asthma is going to behave (if its anything like it is at the moment then I have plenty to worry about) before, during and after the procedure. During which they’ll be removing polyps and taking biopsies to check for the worst case scenario illness like Crohns or Colitis (and even the slight possibility of bowel or stomach cancers, even though, I stress that this is a SLIGHT possible outcome and it is more likely to be something like Crohns or Colitis). The most unpleasant part of the procedures is the fact that I will be having cameras inserted in to me in a rather uncomfortable way, but with luck, I won’t be awake enough to remember much and will probably sleep like a log for days afterwards. I just hope that this is a problem that can be put right as well as the Hiatus Hernia and problems with my stomach valve (causing my reflux) and after a bit of treatment, I can be back on track with that. Maybe if I can eat properly without pain, I can get the energy to get over all of this and move on to the next phase of my life.

The next phase of my life of course involves Jace and me living together as soon as possible. We have started making our mark on the place where we will be living, making small alterations to the layout and décor and making the place look not only warm and inviting, but the place where our love story is set to continue. I don’t feel scared of showing Jace the reality of what an asthma attack looks and feels like, how scary that can become and how it can get from 0-100 in less than minutes at times. He copes better than most people would and when I had a huge attack on the Monday, he was so calm, so kind and so gentle in making sure that I was going to recover and rapidly. I think that had it required the emergency services, then he would have coped well there and would have been more than happy to go in to hospital and make sure I was going to be alright. I think things are definitely working out for me. I don't know exactly how things are going to go, but we'll find out soon enough.

Loves
Wendy xx

Tuesday, 15 October 2013

[insert witty title here]

Since having my injury from my scooter accident last week, I confess, I hadn't been feeling like myself and my chest has suffered notably, what was a chest cold seems to be attacking a bit harder than it was and I was feeling awful in a word. Over the last few days, it has been nothing less than a small mercy that I haven't been back in A+E from my asthma becoming more and more ferocious. Last night though, I realised just what being in love and having someone who loves you with every fibre of their being feels like.

Love is doing the little things that you appreciate. When you fall asleep on the sofa together, and that person wraps you up in their arms and just watches over to make sure you're safe. Love is gently helping to tuck you in to bed and making you endless cups of tea just so that you don't have to run around when you don't feel well or watching films and talking late in to the night about music, games and other such things. Last night, I was really feeling unwell. If it hadn't have improved much more than it was, I would have had to take Jace to the first hospital run, the thought of that used to scare me. It is scary to show someone that a part of being you involves that anxious wait, those horrible sounds and seeing you in that state and in that much pain. I was anxious when Becky first saw it, I was terrified when S saw her first asthma attack and hospital admission, but I soon learned that it wasn't something to be scared of, it is just a unpleasant side of my life.

When I actually started having an attack, bearing in mind that Jace has seen some of my smaller attacks and has witnessed asthma in his brothers, he was so calm. So gentle. So supportive and loving as he helped me to set up a nebuliser and get it running, once it was finished, he made sure I was comfortable in bed to rest and we lay in bed watching films, even if I dozed off for a little while, we just lay together. One film we watched last night was "Wreck-It Ralph" which I had never seen, I enjoyed it thoroughly! For that brief couple of hours, I was happily lying with my boyfriend doing normal things that boyfriends and girlfriends do. I felt safe and despite having to use my stronger pain meds to be comfortable, I felt like I was in a good place. I had a taste of the wonderful life we have ahead of us when he does finally move in here with me. I don't think I wanted that moment to end, it was just so lovely. If it had have ended up in us going to the Alex, we probably would have taken our DS and 3DS and the laptop and he would have made it a nicer experience.

The funny thing actually, going to the hospital with Becky, S, or even Nat, I have seen that it isn't a scary place and the prelude to worse things when I got home. I used to be so terrified of asking for help because, even though at the time things were usually at life or death point, not because of what would happen at the actual hospital, but the events of what would happen after getting home. Now what awaits me is usually a nice cup of tea (or if I've been away for a few days, a nice hot bath), being tucked up in to bed and encouragement to rest, heal and allow myself a few days to get back on to my feet slowly. The process of recovering from asthma attacks is rough and when you live on a constant barrage of them hitting you left, right and centre, it is something that never seems to end and it can leave you feeling like you're on a knife edge and ready to just pack up and say "fuck this shit, I'm done." I'd be lying if I said that I hadn't ever felt that way or even attempted it at some time. There are days where I do feel like I have had enough of this now. Enough having to talk to doctors, enough of having to shovel in a load of pills, enough of waking up at stupid times just to neb or throw another few pills down. It's not easy. At times, it's anything but fun. But you know why I keep coming back and fighting another day? That would be my dedication to keep going no matter what and no matter how hard things seem. Nothing ever is as hard as we think it is anyway, but that's not to say that it's all sugar and rainbows either. What makes it easier is the friends we cherish and the people who help us through the tough times, knowing that when it's their turn, we will do the same for them.

I think, sometimes I worry that things aren't going to get much better and that I am never going to shift this thing, or if I do shift it, then it will just be a matter of time until more of these infections creep in and get the upper hand over me. As it is, it has been a year and this pattern has been a constant, frustrating thing and it has been made worse by a lot of things changing in my life. The stress of organising cover for when Becky left, the stress of money worries, one thing after another breaking down and either needing repairs or replacements, future medical treatments that if I am honest, scare me because I don't know what's going to happen. All I know is that it is going to be a long, scary and painful road, but the light at the end of the tunnel is going to be that no matter what I have to face over the next year, I am going to have Jace and he will be there, with gentle hugs, making sure I can rest and sleep, I'll have the pigs to offer me comfort and of course the wonderful safety net of some of the best friends a girl could ever wish for.

To my friends, I am thankful to have been given such a gift. Some of my older friends particularly, who have been there through everything and anything and we all grew up together. My newer friends (even if some of you live far away from me) are amazing and I love them all dearly like brothers and sisters, surrogate mothers and even some that feel like fathers or uncles towards me. To the small family I am in contact with who are never too far from my thoughts (including my older brother who has always been there for me). And of course to my readers, for reading my anecdotes and probably finding the humour in a lot of what goes on. You guys are all awesome and your support helps me more ways than you could ever know. It's strange to think that this blog is nearly 4 years old now and has been a constant chronicle of life in my rather strange and often confusing world.

Loves
Wendy xx

Friday, 11 October 2013

Still Here!!

It's been an odd kind of few weeks, I will openly admit. I confess that I fell behind with my blogging, not because I gave up, but because I was struggling on something to write a blog about. After all, a fire is unable to burn unless there is fuel, in the same way, as there hasn't been am awful lot going on, there has not really been much to write blogs about. I didn't think my readers would enjoy hearing about the constant infections and visits to the hospital and doctors or how I am having to re-adapt to new carers and new routines.

The hardest part of having new people who come in just to take care of you is trying to explain to them what exactly you need, especially when you aren't that articulate about that in the first place. You have to almost pick apart your entire personality and lay it out on the line, which for a very private person like me, that is actually quite hard. I almost expect people to understand certain things that I don't like (such as continuous questioning, a great way to get me flustered and frustrated, especially when I am trying to do something that I need to concentrate on) to become almost obvious after a few days. My neighbour is learning slowly that I do need to sometimes be left to my own devices to figure things out, but she is also learning about how to spot my anxious habits or when I am trying my hardest to keep up the façade that I am well when clearly I am not. Sometimes I have a habit (and it's not a good one) of trying to do my own things when really I should be tucked up in bed and resting. It's not a deliberate thing, it is just a sign that before getting any help, be it from Helping Hands, Becky or my new carers, that all I had to do was focus on doing everything for myself whether I was well enough or not.

A little bit of independence can be a great thing, don't get me wrong, but you can be too independent and thus a liability on yourself. That's me at times. Earlier today, I was feeling anxious as to whether my new laptop would actually arrive at the right address (basically, Tesco confused the order and tried to send my new laptop to the old address that I sofa-surfed with my then boyfriend, they had tried taking it there twice! So I called up the suppliers and DPD and rearranged where the delivery was headed, it took a couple of hours on the phones but we managed to have it delivered to the correct address and now, here I am with a nice cup of tea, typing away) and I started to dust and meticulously clean the TV bench including my Halo Lego models, X-Box and TV itself, the result of which was a rather horrible wheeze and a lot of inhalers to get rid of it. Another of my anxious habits that has come about again is the way I used to pick at the skin near my nails and about 2 weeks ago, I managed to strip the cuticle from one of my fingers. Luckily that has grown back, as well as the skin on my hip and leg that was stripped due to eczema!

Things are settling in to a kind of normality now. I have started to get up and dressed at certain times, unless of course I am feeling like crap and I really don't want to move, and my medication is definitely getting done, whether I want it or not. I'm starting to stop being so shy and reserved about opening my curtains in the bedroom. I now let the light in, the other night, I was sat in my chair leaning back and thinking as I watched a few bats flying towards the woodlands. It was nice because I was just able to focus on just watching outside and nothing else. Recently I have been feeling a lot more calm, despite some minor episodes which I worked through my own way. My mental health hasn't changed much but since stopping Sertraline and moving on to Cipralex I have felt a bit more like the happy-go-lucky, upbeat Wendy that I did wonder where that person had gone. It's only been with the help of others that I have managed to find myself again and learned not to be so scared any more. I saw my Ex in town recently and instead of feeling scared, I just rolled past him because I thought about how stupid I was to ever let that person control my life.

I hold my head up high because I am on the right track to where I need to be and I am going to get there my own way. I want to keep going, not just to see the big milestones, but to be able to smile and look back and say "Yeah, they said I'd never get this far, but here I am." They said to me at 22 that I wouldn't make it to 25, let alone 30 and here I am, just over a month away from my 26th birthday and still going strong. OK so my health has deteriorated but we always knew it was going to. The trick is to just accept that sometimes things are going to suck, but when you feel like you're running out of rope, tie yourself a big knot and get a grip! No matter what situation you're in, you are no more, or no less better off than anyone else. Everyone has their own pile of shit to wade through, OK so it probably isn't the same pile of shit as you, but that doesn't matter, it's not a contest! I think it was said in the film Fight Club about how we are all the same and some of us need a massive dose of "Get-over-yourself" to sort their own lives out, well that was the thing I took from the film anyway!

Since starting to socialise and go out to places more often, one thing I have learned is to love the people you live around and live around those you love. You can give anyone expensive gifts and trinkets, but the most precious and lifesaving things out there are love, friendship, compassion, companionship and hope. When I was ready to throw in the towel before and give up, these things saved me and guided me to another way, I found that by hurting myself and doing those things, I was actually hurting the people I loved so much and who loved me. Worst still I would have disgraced anyone who had died from an illness and not have had the option to make their own choice in all of this. Suicide isn't painless. I have come to the conclusion that suicide is actually selfish. I've also come across some other rather interesting philosophies recently but I will save those for another time, as one or two may be a bit weird to comprehend right now!

Loves
Wendy xx

Tuesday, 10 September 2013

Changes...

I've recently started using some physio techniques with the emphasis on clearing the stubborn mucus that has been blighting my life for a while now. Because I have been getting the same infection on and off for over a year, we are now starting to worry that there has been some lasting damage, not just to my lungs but some of my other organs as well (antibiotics and other medicines can be tough on the kidneys, liver and prednisolone can be murder on the stomach). Its been rough on my body and we need to know if there has been any lasting damage done. I'm hoping that if there has been any damage, it is something that can easily be put right and I can kind of reverse the clock back to how I was this time last year. The thing I have to keep in mind though is that there may not be much more we can do.

One thing I started doing was Active Cycle Breathing. It takes a while to get the knack of it, but I have managed to do a session of it every day since leaving hospital. Its backed up with a session of Flutter and then more active breathing. before I can cough and get the nasty secretions off my chest. The whole session takes me about 15-20 minutes and I have to do it 3/4 times a day along with saline nebs and normal treatments. My medical treatments take a lot of work and they're very time consuming and exhaustive. It is worth it though because once I've had a good 15 minute session, I can cough a bit and move the stuff out of my bronchial tubes, which does result in me breathing easier and a lot more comfortably. so it's no wonder that I can't really get the energy to do anything and it makes me feel a bit down at times.

I have also started using a "Flutter" device. This consists of a high density steel ball and cone assembly that when blown in to, produces a low frequency vibration (or fluttering sound) that helps me to break up, loosen and effectively remove stubborn ick from my chest. Since using it, I have managed to clear my chest of some of the muck and I have had much better and clearer breathing, something that for me is something of a rarity but it's OK. I have to blow in to it at several speeds a few times a day. Once it's done I have to "huff" for a few minutes but I have never felt so clear and my breathing hasn't been this good for a while. I did have a bit of hassle getting my flutter device, they're not something that is regularly prescribed and as a result the local pharmacy doesn't have them readily available. So once I got my prescription filled, we had to actually ask around the suppliers for Lloyds for it! It was kind of funny and when it arrived, everyone was intrigued by it and they asked to let them know how I get on with it. I like the people at the pharmacy in town because they treat you as a person as opposed to a number on a screen or piece of paper, I always go to the same one so they know me pretty well these days and when I go in, staff always come over to ask how I am and talk to me. Its nice to be treated like that.

I hate feeling low and sometimes my condition makes me feel like I am drowning in either the muck that I am bringing up or in the run of overwhelming circumstances. Regardless of what anyone thinks, a hospital can be one of the most frightening and disconcerning places I have ever had to go to. It's weird to think that I am a regular there and not at a place I can enjoy myself in. They're intimidating and everything you do is subject to scrutiny, theres mainly a lot of older people on the wards and there are the few that look down their noses at you if you're under the age of 60. There are even some patients who are so confrontational that they shout and scream at you just for being there and taking up a bed or having to have a lot more hands on care. You do get the odd really nice person but in my experience, a lot of them are rude, abrasive and general stuck up their own arses because they don't like that one person is getting more care than they do. It's actually a jealousy and attention thing but it does make you feel more stressed in a situation that is hard enough as it is, like you have to justify to THEM that you feel the way that you do, which is not the case.

Life has been about changes recently and some of them have been harder than others. One change that I am looking forward to most is that Jace and I are planning to take the plunge and live together soon. I'm really am going to enjoy being with the man I love and I feel so happy about it. The sad part is that unfortunately, due to her own reasons (which I won't discuss as I respect her right to privacy) Becky did decide to go back to her mum's today. Not because of a falling out (we're just as close as ever) or anything like that, but because she has her own set of challenges and her own journey and I respect that and will still be there when she needs me. She will still come and see how things are getting on, but she has left Redditch. After all, it was never going to be a permanent thing and we both knew and understood that. Do I miss her? Of course I do, but in order for her to get to where she needs to be in life, she needs to find her own path and not have anything to stop her from following it. As long as she is happy in life, then I am happy. Besides, living with Becky has prepared me mentally for the challenge of living with another person and now I feel ready to take on the challenge of living with Jace and I have given her a taste of life outside of the family home and she's really grown up in the time she was here. I have wonderful friends who are willing to help me out with the care side of things so not to worry, my health isn't going to plummet because I was alone for weeks on end!

Things are going well with my new carers and I am getting the care I need, despite my stubborn nature and wanting to help everyone else out. It looks like for now, I am well tended and have been curling up on the sofa in my pikachu onesie and watching cartoons, which has been quite a different change of pace for me, I'm not used having people run around after me and I have always been so independent and I think that at times, that has been my downfall because I'm so reserved and nervous of letting others help me. It's not that I deliberately push people away, I just feel wary of other people, probably because of things that happened years ago, but I am learning to slowly trust people and when I do open up, its nice. I'm learning about the right people to open up to, as opposed to some of the people I used to open up to.

Loves
Wendy xx

Friday, 30 August 2013

Its Been a Summer

I've been thinking a lot recently, life isn't going to be the way it is forever and sooner or later, a few things are going to change. I don't usually welcome that on the whole, but with so many things changing for good reason right now, a few more changes won't hurt. The most wonderful thing to change is my general attitude and outlook towards life and my urge to just do what ever I like rather than listening to other people telling me what I can/cannot, should or what they are going to do. Don't get me wrong, I love my life as it is right now, but I wouldn't say no to any way that we could make any positive improvements, such as a way of preventing the stream of LRTIs (Lower Respiratory Tract Infections) that have plagued me for nearly a year now. Right now I am battling a pneumonia infection which has kicked the stuffing out of me.

For anyone who is lucky to have never had an LRTI, it is hard to explain how much of a strain it can put on your body, particularly for someone who has brittle asthma. They make my chest feel heavy and the effort of breathing with them puts a lot of extra work on to the muscles in my upper chest, neck and stomach, as a result the smallest things can be exhausting and short distances, like to the toilet and back, can feel like you're walking a mile. Its not a fun thing to end up with and it really can knock me for six and the symptoms always seem to go away for a little while before coming back with a vengeance and the onset is really quick.

Usually it starts with a bit of a cough and my asthma being a bit off. Then as time goes on, it hits with a barrage of a high fever, chills, cold sweats, asthma being way out of our control and bringing up stuff that I am sure would glow in the dark. It does sometimes make me feel like I want to throw in the towel and give in, but then I remember the inspirational stories of others who have been through worse and are still fighting. If they can do it, then what is stopping me? Rather than self pity, I choose to get up, dust myself off and keep walking, even when its not easy. I'd hate to prove any doubters right and I just keep my head above water.

When I'm not well and have to stay in bed, the trickiest thing is finding a way of keeping me occupied.  Because I am the way I am, I need to keep my mind active or I can start to feel depressed and discouraged very quickly. Sometimes that means that I feel as though I'll never win against this but I have to keep going and pushing through the whole thing. I've been keeping myself busy with old Transformers cartoons, games on my iPod and tablet PC (which I have had for over a year now! And it's still as fast and useful as it was from day 1) and laptop. I enjoy playing with gadgets and they really are a welcome distraction on less good days.

Next month is going to be a bit tough. I've got a lot of appointments coming up for a number of health issues including my chest and stomach problems. It's probably going to point to autumn and winter being seasons of medical tests and maybe surgery to correct what can be corrected, if it can get fixed. I'd be happy to at least not be in pain for a while and not have my asthma so complicated. I'm praying beyond prayer that this will be so because when Jace and I begin our next stage together, I want to be as well as possible and able to enjoy our lives together to the fullest. Have faith and things are going to get better!

Loves
Wendy xx

Monday, 26 August 2013

My Brother.

During my hospital stay, I watched a film that brought back a lot of wonderful memories of spending time with someone who I always looked up to, even if at times it didn't look like it. Whenever I think of the times we spent just talking about things or all the times he was there for me, I smile. I'm actually not ashamed at all to admit this, in fact quite the opposite, but I really do love my eldest brother, Richard and he has always been one of the strongest male role models in my life.

I have 2 brothers, Richard and Stephen. Richard, 4 years my senior, lived with our Nan and Aunt, because of reasons I don't really wish to say, and we used to see them every Saturday, and Stephen, who is 2 years older than I am, lived with my parents and me. Stephen and I never really saw eye to eye and I think the main problem is that we just ran out of things to talk about and both grew apart, not unlike our dad and his elder sister. My mum and dad weren't very "touchy-feely" with us, but our nan was. I used to prefer it at my nans because I felt loved and wanted there. Richard was a much more approachable brother and would never raise his hand towards a younger sibling that he believed was stepping out of line.

One thing that helped Richard and I to bond was that at the age of 9, I became interested in "The Transformers". It was something that we always had around us as kids (Richard and Stephen had loved it for most of their lives) and it was only natural that I was going to become just as curious as my brothers about it as time progressed. "Transformers the Movie" is probably one of those films that I can recite word for word, even now. Stephen had a copy of it on video (which he gave to me when he was bored of it) and I would sit and watch it as many times as I could because I really loved the animation and the story. I felt drawn in and even as a child, I remember how scary I found Unicron and how he ate other planets. I remember Richard gave me this Ladybird book of the film and read it to me a few times.

The one thing that does make me remember with a smile is when I used to go to my nans after school as my mum was working late. I'd had a rather horrible day at school and had been feeling really sorry for myself and wanted to cry. Richard took me to his room and we watched Transformers together, after a while I started to open up and I talked to Richard about everything and I told him what had happened at school. I found that as I got older, I was more able to speak to Richard. Yeah we had arguments but that's brothers and sisters for you.

It's his birthday this week and I have something to send to him and I wanted to tell the world that I am not ashamed to say that I love my brother.

 Love
Wendy xx

Sunday, 25 August 2013

A Lesson in Tightropes

*ATTENTION: This is a VERY upsetting post. There were a lot of things that were distressing to me at the time and it was hard to get it down. This is part of the catharsis process for me because its there and then that I can face what went on and get through the aftermath. I have changed some names to protect the privacy of others. Please don't judge me for wanting to get this down and off my chest, this was an event that should NEVER have happened to anyone. Although I cannot fault the care from the staff nurses, HCAs and Doctors on Ward 12 that night, there was one person who made the rest of them look awful. I am pursuing a complaint against that one person and I will do what I can to make sure that no one has to go through something this dreadful again.*

I learn and relearn this lesson often, the problem is that 9 times out of 10, I am often too stubborn or cocky for my own good. Yes, I know my conditions better than anyone else, after all, I am the one living it day after day. I do hate it and I find that admitting that things are so out of sync that the only way for me is in to an ambulance to get seen to. Sometimes its easier to say "enough is enough" and just let the staff do what they may. Most ambulance and hospital staff are lovely but there are some who aren't so nice but that's life isn't it?
I know I left things a bit longer than I should have. I was, I think, determined to pull it around and settle myself. And everyone knows how hard I tried. Before making the call, I was completely withdrawn and spent most of my day either sleeping and doing treatments. Even simple things like sitting and watching TV exhausted me and I was seriously apathetic. In hindsight, I should have called on Monday when I went off and had to do 6 neb before falling back exhausted and in a lot of pain. The weird thing was, I did a tarot spread and it predicted (with spooky accuracy) the rest of my week and what was going to happen.

It all started on Wednesday after half scaring Becky to death by not breathing properly and I knew in myself that I was in for a rough ride. I don't actually remember what I did that day or what I was doing when I went off but I went off not with a bang at first, but a fizzle. Sarah* came in with me just so that I'd not be by myself, Becky had some personal matters to attend to which I was fine about. After seeing doctors and a staff nurse who took 2 hours to do as the doctors asked ("but her sats and fine!!" "stop looking at one number and look at the patient as a whole....!") and I then had the debacle of getting a bed and wound up getting a tour with an oxygen tank between my knees and 2l blowing up my nose (meaning my sats were only fine because I was really compensating). By midnight I was finally left on ward 12 where I tried to sleep but pain was getting the upper hand.

By morning I looked like an extra from a really crappy zombie film. My eyes had sunken and were heavily ringed, I was barely saying much and I was struggling to breathe despite the supplementary oxygen.
Being subjected to 8 hours of pain was torture. That evening my body was starting to shut down and my sats plummeted, I was moving little air and we were all terrified, was this the end? 2 of my best friends came to see me and they bore witness to the whole event. Medication that never got given (I was supposed to be on back to back nebs and only got about 2-3 over the space of 3 hours), because the nurses were so busy with patients being overly needy and a nurse practitioner who was more interested in standing there and discussing this that and the other rather than helping a patient whose oxygen saturations had fallen from 97% to a distressing 89% and then down to 70% for a brief time before the doctor got the nebulisers herself and turned the oxygen up a little. She just branded me as some kind of junkie who was only after pain relief for a high, even though everything showed just how genuine this pain was and how crippling it had become.

All I wanted was to sleep and not be in pain for a moment and I was getting so distressed that I stopped caring as to how the pain was going to stop. After 7 hours I think I decided in myself that I had had enough of it and tried to discharge myself, ripping off the nasal cannula and attempting to pull my IV line out. I was sure that I was going to crawl in to a woodlands, go to sleep and never wake up. The pain and feverishness coupled with my breathing and low oxygen levels had just got to me and I could feel myself losing the will and energy to fight. I got about as far as the end of the bed until the staff nurse and healthcare assistant (who were both so lovely, compassionate and understanding) actually had to put me back in to bed, put my oxygen back on and the HCA stayed with me as I sobbed and tried to comfort me with gentle hugs and sitting on my chair holding my hand and stroking my hair as I tried desperately to be comfortable but I just couldn't do it. I have never experienced pain quite so severe as this and I actually thought that was going to be the thing that killed me.

By midnight, they managed to sort me out some pain relief without that bitch of a nurse practitioner crossing it off. I had been in agony (it actually felt like I was inhaling broken glass and nails) for over 8 hours and the doctor who was asthmatic herself understood how painful this condition really is. I was so tired that I was having to push myself to keep breathing because I was not moving much air still and my body was starting to run out of steam. I was cold, clammy and my heart was beating really fast, the spasms made me flinch everytime I took a breath and every time I spoke. It was thanks to the doctor that I was given a bit of Oramorph just so that my lungs could relax and make the spasms and pain easier to deal with. With the pain gone and other meds given to calm my asthma down and after all of that, exhaustion got me and I eventually went to sleep, I think I had gotten to the point where even if Sephiroth walked in to the room stark naked and started giving me a lapdance, I wouldn't have cared at all.

That was probably the most traumatic thing to have ever gone through. I'm used to swamped nurses, but being told by a nurse to "drink and go to sleep" was just rediculous. I used all the energy I had to almost scream "If it was that easy, don't you think, I would have done it already?" although that was broken up in to 1-2 word segments. Why did she keep crossing things off and refusing to give me medication? Surely what the doctor should have said would have gone? I'm not sure what went on there but I am going to get to the bottom of this, mark my words. I came home yesterday and I am still kind of trying to re-adjust to life outside the hospital. My arms are bruised from blood tests, cannulation, recannulation and a cannula explosion (I managed to leave some strange blood trail from my bed to the nurses station). It's been a horrid week and I am absolutely exhausted, I hope I'm back on the right track, although a part of me is wondering about whether I left the hospital too early, but I could see that they would need the bed for another person eventually.

Loves (and gratefulness)
Wendy xx

Sunday, 11 August 2013

Freedom!

Maybe it's because I can finally feel safe again, but I am actually glad I had the courage to actually come forward and do something about a persistant problem that has been a bit of a nightmare for the last 2 years. Today when we went out, it felt like a huge weight was gone off my shoulders and I could just get back to enjoying life and not have to deal with someone who should have gotten the picture by now. I do feel annoyed that it had to get to this point, but there really are limits to how much you can actually take of something and I had finally reached that limit.

Now thanks to the Harassment Warning that has been issued, this person will no longer be able to try and approach me, contact me via E-mail/social media/blog comments and they are not allowed to blog about me or mention me by name in their blog (I was pointed to their latest rant by a reliable friend, and I have taken the screenshots as requested by the police officer to help us build a case to get a criminal Injunction served on this person, which is kind of like a restraining order) unless they would like to be liable for arrest, being charged for stalking and harassment (yes it is a crime) and even running the risk of serving time in prison if they carry on causing or trying to cause trouble. When the police officer called me yesterday and told me that the warning was served, I felt elated and like I was finally going to be free of this. Although she did mention in amusement about how they tried to get me in to trouble for "endorsing kidnap on an 11 year old child" (it was so stupid that everyone who read it all agreed that it was the biggest load of bullshit that had ever been spoken!) and we did have a chuckle about that. In her words "he didn't like being told that he had done something wrong and wanted to try and get you in to trouble, it was quite childish really!"

I knew I was in no real threat of getting in to trouble (it helps being friends with a barrister) and that all this was really was a rather flimsy attempt to make me think "oh no, maybe I should drop the charges..." which for that person backfired spectacularly. I do hope that for their own sake that they heed this warning and take it to heart that I really don't want to have anything to do with them and I am actually moving on with, and enjoying, my own life. There are going to be some changes in the next few months (more on that as things develop, but I think one thing will be a pleasant surprise) and I am really keeping positive for those reasons.

To be honest, it isn't often that you meet people who show you the way, especially when you feel so bogged down that you can't seem to work it out and the map seems like a blank page. So when I met 2 people who did that for me, it was probably the start of my return to the person I always tried to be. On my good days, we laugh together and we have fun, whether its something like a trip out somewhere or just curling up on the sofa and watching a daft film and on my bad days, they pick me up and help me to find a way to keep going, even if it hurts or I don't know how I'm going to do it. They take my crap when I feel frustrated and I take theirs. We support each other and always work on the ideas that you should never go to bed angry and its easier to admit when you've been a jerk than keep trying to ignore it and pretend it never happened. No matter how hard you try, you can't get on all of the time, but it shows a great bond when you can get angry with someone and then forgive them and they forgive you.

I am glad that I finally managed to stand up for myself and stop this because it was becoming rediculous.

Loves
Wendy xx

Saturday, 10 August 2013

Harrassment Warning Issued.

I'm glad to have started to move certain things on and its reassuring to know that someone out there is listening and no matter how much someone believes it to be the case, I don't have to put up with stalking and harrassment. I'm not going to allow myself to become a victim for anyone to push around. I neither want to or have to anyway. I'm stronger than this and I am stronger than some people take me for. It helps as well that I was transparent with the police when I started the ball rolling on this. I showed them everything from a certain conversation (the one which made this person accuse me of "endorsing" some kind of kidnap, this is what we call baseless conjecture) to all the lovely emails and other things that were sent and I stowed away in a file on my computer and iPod so that if it came down to it and it did end up in the courts, we have a shed load of evidence to back us up. This person will get what they deserve and they won't make me feel threatened ever again.

I think it has been a weight off my mind and something of an uncomfortable subject as its been going on for 2 years and it's all started because I decided that I didn't want to be in a relationship where I was miserable and couldn't live like that anymore. Yes I got the flat, which we only got because of MY support worker and the forms *I* filled in and even the council had said that I was the one entitled to it as my flat is "adapted for the disabled", I got my DLA and ESA to support myself (something that hasn't been going too badly if I do say so myself) and because of the things she does for me, I trust her enough to claim Carers Allowance for me as she does care for me and she isn't simply cashing in on my illness for her own means, like so many others would had they been given the chance. I paid off the "White Goods" from Penny and am now just paying off the scooter that she and my doctor helped me to get. So in short, the things I got to keep, were either mine or my entitlement to keep in the first instance. In fact none of the things I was actually accused of are true, it's just a childish attempt to try and get me to suffer in silence.

I abhor bullies. They're cowards and they are a waste of space. Especially ones who try and prey on the weak because they know that if they tried it on someone who wasn't as vulnerable, they would be the ones to suffer. This person stooped lower than that, he tried to bully someone who is disabled and vulnerable, but you know what? I let that person make me miserable before, I won't let them do it again and again, I'm not a victim and I refuse to allow myself to be treated like one.

Friday, 9 August 2013

I'm going to murder my laptop!!

I've come to the conclusion that Bahamut (my laptop) is trying to mess with me a bit. I love my laptop and for the 3 and a 1/2 years I have had it, I feel that it is a worthy machine to replace my old one. I think that it, like most things has developed a number of quirks to.keep me on my toes, but there are times when it just does something at random and I sit there wondering just how intelligent are computers these days?!

The other morning I was awakened at half past 6. Despite it being tucked just under the bed where I usually store it, reason being its out of sight and if anyone tried to take it, I'd know and wake up right away, it turned itself on despite not having a lot of charge in the battery and all I heard was "boooop!" every few minutes. So I was up early for a doctors appointment for my chest (it's been giving me all kinds of bother recently) because what we were thinking had started with a kind of summer flu bug has just gone as usual to my chest. Not very nice at the best of times.

You know you must look and sound rough when the doctor doesn't even need to listen to your chest to know you're not quite right. So long story short we're kicking it away with 10 days of Cipro (Ciprofloxacin, try saying that quickly...) and very strict bedrest and get help when I need it. The biggest issue has been the inflammation inside which causes pain on breathing in, but that does pass eventually. I think the dead giveaway was I wasn't my usual bubbly self and I couldn't even find the interest to put my ipod on.

Our neighbours have been helping while Becky visited her mum for a few days as she does every summer. Afterall everyone is entitled to some time off, it's only fair.

Sarah* and Nick* are lovely people who have had a stint of rough times, I pay Sarah to help us with general housekeeping a few times a week. Of course I play with their little girl and keep her entertained. I love kids, well sometimes its hard to keep them amused and not all children are good and as well mannered as Ino* (* names have been changed to protect their right to privacy, not that they asked to be protected but as there are a lot of dodgy people about, you never know) and she's a funny little ray of sunshine.

I've always said that my life isn't perfect but it is still good. We may only live in our one bed flat but it is our home. Always full of laughter and random conversation about things. Its the people in my life that give me hope and a certain sense of confidence and I couldn't ask for more.

Loves
Wendy xx

Saturday, 3 August 2013

Proud.

I am so proud of myself, but I do believe that some of the credit is owed to my readers for acknowledging my blog and helping me see the light inside of me. With all my page views and positive feedback it really is the people this blog reaches that keep me writing. Even in the 2 years of writing this, I have grown as a person and you guys have all been there through the highs and the lows and its been both cathartic and fun to keep this blog, and I will continue to do so as I am really feeling as though I am achieving something special here.

When I started this blog, my couldn't be more different. I was in a place that I was miserable and I wanted so much to believe and hope that my life would be more than this. It's taken me through moving house, turbulent relationships and more attacks and nebs than I care to mention. I promise to my readers that you will continue to read about hope, humour and how I intend to make this work!

Loves
Wendy xx

Safety

The most pleasant thing about the last few days is that I recieved an email from Health Central saying that my blog is among the top 11 asthma blogs. It's a huge honour and a privilage to know that my little blog reaches as many people as it does and it really makes me glad that this blog was made. I've had so much positive feedback over the last few years and it's good to tell my story. I like that people know that disability doesn't always affect the elderly and that there are so many people under the age of 30 who live with a long term, life limiting illness or any other kind of disablility.

I was talking to the Shopmobility people in Redditch, they agreed with my campaigning to make the voices of us disabled youngsters heard. I'm also planning to do some voulunteering (mainly on events just holding a collections tin) for them in the future. It's a worthy cause and something I personally believe is wonderful. They help people with disabilities to enjoy something simple, like going to the shops and enjoying days out in the town centre. I know for myself that getting around when you're sick or unable to walk for any other reason is difficult and sometimes very painful or risky. And many don't have the means or wonderful friend who can help them to get thier own mobility aids, like a wheelchair or scooter, so to hire one is liberating.

Since getting my scooter, I have been so much happier. I can get get where I need to and have been so much more independent and happy. Going out to town to get things isn't a chore anymore and its a huge pleasure. I went to town earlier today and I was enjoying the fact that I could get about without getting so short of breath that I would have to take my inhalers or nebulisers. I've not felt this free for over 3 years. I felt like a prisoner of my condition which made me miserable and isolated. So many people who have health problems feel that they can't relate to the rest of the world. I can say I understand that feeling as for so long, I felt lonely and like I couldn't relate to friends or family. Maybe I was ashamed that I had gotten to the stage when even the smallest tasks made me struggle to get my breath that I didn't want to see people and I did get more depressed.

I'm finally liberated myself from a persistant pest that had been trying everything they could to hurt me or ruin my life. I have finally managed to get something done because the stress of it was affecting me emotionally, physically and making me frightened to live my life. But now something is happening so that person will not be allowed to bother me, and if they do, I have the grounds (and the will) to call the police. I hate that it has come to this and it is such an annoying thing but what this person is doing is a crime. I was completely transparent and showed them 2 years of emails, blogs slandering me and everything else this person threw at me, and I showed them any replies I foolishly made. The problem is that if you want something done about something, you sometimes have to reach out and ask them for help and you have to go with your instincts. I feel liberated and I am finally getting the peace of mind I deserve.

I guess now its time for me to relax, laugh and feel like I ought to, with a nice drink (non alcoholic obviously) and the feeling of assurance. 

Loves
Wendy xx

Saturday, 27 July 2013

Being Wendy.

I've been looking over at people I went to school with. So many of them have changed and some of them are so different to how I remember them. I find it amazing how much so much people have changed in 10 years. And how little I've changed, I've just become more mature. I looked at some old photographs and I can honestly say one thing, I had to grow in to my features and to be honest I was a weird looking kid!

But my personality is the biggest thing about me to not change too much. I'm still scatterbrained at times and very clumsy, as well as shy around new people and I can be highly strung sometimes. But under that, despite everything, I'm not cruel and jaded, I still do what I can to help people and when I get to know them, I can be very kind, gentle and friendly. I still listen to the same things I did 10 years ago. I still dress how I like and wear clothes I would have worn then and my hair, well that just carries on being dyed whatever colour takes my fancy.

Maybe I reached an adult level of maturity at a young age. I could always talk to adults better than people my own age because I never found them as intimidating as I found other kids. I started writing and answering little notes to game characters because I could talk to them about anything and they'd never tell a soul. I think I always felt like I never belonged as a child and even now I wonder whether I am where I need to be. The only difference is that now, I've learned to accept that no matter what, I am never going to understand a lot of people, nor that I want to, and only a few people will ever get to know and understand me in turn. I'm actually OK with that because chances are, I won't like a lot of people.

I'm proud to have kept that individuality. It's what makes me who I am today, even if that's an eccentric and crazy person. To me, that is the whole point of being who I am and anyone who doesn't like me can sod off really because I'm not going to run away and I'll carry on proving that I am the person I can be proud of.

Loves
Wendy xx

Friday, 26 July 2013

Naps and Wasp Stings

I have been napping a lot recently. For no other reason than my health problems are exhausting. I'm really contending against some rather intense issues and they can take a lot of work to keep them all balanced, from taking 21 different medications in a carefully devised regime to getting enough rest and appropriate nutrition. Its a delicate balance to keep but one we manage all the same.

Knowing that a number of things can't be magically cured is rough but it made me stronger as a person because I had to learn my way around them. It has been difficult to figure out and sometimes I feel quite unhappy but I am coping. I just have to remember to take it one step at a time rather than trying to get it right straight away. Being me is a big job and I wouldn't have been given it if there was ever any doubt that I'd do it. Even if I struggle sometimes.

I am struggling a bit but admitting that isn't me being weak. It's me being strong enough to reach out and say "I can't do this by myself." and to be frank, its not a bad thing to do when you think about it. Its sad that so many other people are too proud to ask for help and then end up suffering as a direct result of that.

As for the here and now, I am happy with how things have progressed in the last couple of weeks and I hope things continue to grow and mature. I also hope that no more wasps decide to sting me. I have had 2 this year, one had my finger and today one decided that the heel of my hand looked like a nice place to stick its stinger. I wouldn't have minded but I am allergic to the stings and they make me swell up and it bloody hurt!

Loves
Wendy xx

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