For life's little ups and downs.

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

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

About Me:

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

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

Wednesday, 28 May 2014

Time Well Spent, and a Thought of Normal.

I had a fantastic time in Blackpool with Jace. Everything went as it should (admittedly it got a  little hairy at one point because of my chest but nebulisers, pred and my oxygen settled it, then pain killers to make me comfy so that I could rest. During this attack, as usual Jace handled and if things had gotten too out of hand, we knew what to do. It can be difficult to manage a long term problem when you're away from home, where the hospital staff know you and your specific case. Luckily it didn't come to it but I know I can be confident with Jace should the situation arise. It takes a special kind of person that can take on someone like me, so-called "damaged goods" and handle calmly and carefully some things that others would (and have in the past) run a mile from.

Before I could go anywhere though we had to arrange some oxygen cylinders for me to use. I'm on my oxygen typically for 16 hours a day at 2l so that was really important to be sure that once I'd arrived I'd have my supply. I carried a tank for getting there and back, something else I was wary about (having never travelled on a train with it) as I had concerns that they could have refused to let me on board. The good thing is that all the staff at Redditch, Birmingham New Street, Preston and Blackpool were all lovely and so helpful. They took good care of me and made sure I could travel in comfort. Travel has made me weary and I'll sleep well tonight.

We spent our time together happily talking, watching films, snuggling up and playing Yu-Gi-Oh (a very fun card game) and enjoying each other's company. I have only travelled to Blackpool a handful of times but the sea air does me some good, I'd move out there if I could but my specialist doctors are in the Midlands and so are all my friends and family. I'm grateful to my doctors because without them and their work, I wouldn't have been able to go. I'd probably have returned home and back to being sat, barely awake or aware of anything. I never realised how much things had changed, it was gradual. Not like I woke up one morning and said "you know what, I want some oxygen and all the meds I have." Going out takes planning. I have to meticulously plan everything, from route and transport to time and any possible delays or problems. I have to make sure that I have everything in place and that all my meds are where I need them.

I've always loved travelling on trains. Maybe it stems from a childhood of loving Thomas The Tank Engine and the fantasy of the trains on Sodor, almost stuck in a Victorian era, before electric trains took over. Occasionally you do come across a steam engine (one came through Preston earlier, I had to stop and watch) and it reminds me of the old books that my Nan used to read to us. I brought myself an omnibus of all of the original stories some years ago and whenever I feel a little down, I read these stories (along with the Beatrix Potter tales) and it does take me back to those old days. Days when the most I was worried about was where my favourite toys were or when I could watch a video.

One memory I have of childhood was on one of my videos, there was this graphic from a company called "The Video Collection" and it always used to make me jump and I was quite afraid of it, lulled out of hiding only by the old piano theme song of Thomas. I used to have a lot of appointments with the eye clinic. I was born with a squint, a kind of eye defect in which the muscles behind the eyes don't work properly. It subsided from the age of 7 until my early teens where it sank almost to the very corner, I had surgery on it at the age of 14, but it has come back a bit now in my adult years and my right eye still doesn't work properly. As a child, I just remember being off school for the appointment, having a strawberry fruit corner and watching my Thomas video.

I remember having my eye operation, well I remember going to the station with Mum and Nan (and for some reason I still have no idea of, my brother) and getting to the hospital. I sat on the ward until I was called. I felt nervous as I was laid down on a trolley, the next thing I remember was waking up, asking for my plush Tazmainan Devil and going back to sleep. I was really nauseous due to the change in my eye's position in my brain and we were in the process of moving house. I spent the last 2 days in the home I grew up in sleeping and standing in the bath to admire my "normal" eyes. I had to stay at my Nan's for a couple of weeks while I recovered, I'd been given some money by my Mum, I brought myself a lot of Crayola art products. I spent most of my time drawing. Not really much has changed! The one thing that stays on my mind is that feeling of "normal". I'd do anything to be well, not struggling and not having to rely on medical equipment in my day to day.

I still draw, pretty much all the time now. It gives me something to do because they never told me that a life on the sick means that you have time. Lots of it. Sometimes it feels like you have too much so it comes down to just filling the time with things I like. Be that drawing, writing, playing games or spending time with loved ones, because none of us know exactly how long we have, so its best to spend that time wisely.

Wendy xx

Thursday, 22 May 2014

Bank Holiday Weekend

What can I say? I like to break the mould when it comes to my health and the way I generally live my life. I try and make the best of everything, even on days it is harder than others. Those days, I tend to lay low at home and do things there. Whether its sewing, drawing or spending time with my furry friends. The young pigs are settling in well, and they are each little characters in themselves. Scruffy seems to be the biggest cuddler so far and he likes to lick as well. I brushed his fluff today and he didn't squeak the house down. Bumble explored the sofa and Natt's bed and Tigger has taken to following my senior pig around. I'm a lover of small animals and living with 4 rabbits and 4 guinea pigs is heaven for me. There is something amusing about a young 11 week old guinea pig trying to rumble at Tenzou who is about twice his size (he's nearly 3 years old) and being sat on as a result!

I'm looking forward to next week, I've had the tickets pre-booked and I have booked for oxygen to be delivered there ahead of me and I have my chair. I'm going to spend some time with the one I love in Blackpool. I am counting down the days and can't wait to wheel off the train in to his arms. We had a bit of a long time apart because of my health being so poor and I was spending more time in the local "Hotel de NHS" than anywhere else. I spent most of the last few months on the wards, drinking machine tea and struggling to get my breath. It'll be a nice change to be able to go away and not have to worry too much and not have to be bugged every few hours for obs or meds. It's kind of like a holiday. The best part is finally getting to see Jace because I have missed him terribly and felt like something was missing for so long. Even of I have to travel with a supply to get me there and back, I can accept it, it's going to be just another of those things I have to adjust to and another reason to keep going.

I've been home now for about a week and it's been fantastic. My own bed, my surroundings and coping a million times better than normal. I'd like to say that it was because of a general state of better wellbeing but we all know its because of this new treatment. I think that part of me is worried that they would take it away again but my worries are unfounded. Like when I worried that my nebulisers would be stopped and got myself all in a twist. Luckily Jace and Natt managed to get me to calm down and not walk around without my oxygen to watch the numbers drop as they did. I think I was trying to prove to myself that I needed it, rather than anyone else. I'm stubborn and often need to remind myself (under cover of reminding someone else) that certain things are done for a reason, not for my pleasure or displeasure.

I am feeling a bit run down today. Well since Wednesday really. I called up the doctors like any sensible person would and explained to them my situation. I am one of those patients that they try and get in ASAP. Before knowing it was me (the grim thing is the receptionist knew my voice "is that Wendy Bostock?") the next appointment would have been the 4th June.
Luckily we managed to get one for next Friday afternoon and I was told to wait and speak to a doctor. After a run off of my symptoms, fever, cough, green sludge as well as fatigue and increased asthma, it was agreed right away that I have still got a chest infection. Its funny, doctors know me well enough to know that when I say something's wrong, then something is wrong. I'm not one to make a huge fuss over nothing or "cry wolf" over a slight sniffle. So I'm on some antibiotics and told to really keep a close eye on things.

The funny thing is, had I not had my tanks, I'd have needed to be readmitted which would have been the last thing we wanted. I'm feeling pretty thankful to be able to do what I have wanted to and I am just so much happier. I know that seems to be most of my posts but its been a long time since I felt this well and to be honest, I'm not going to waste any time being miserable or "hard done by".

Wendy xx

Wednesday, 21 May 2014

Inhalers In Schools.

One thing that has come to light and actually shocked me is that it is illegal for schools to carry emergency asthma inhalers. This is shocking because there are a lot of kids these days with the condition (it is one of the most common in the UK) and still, people underestimate the simplest of facts.

Asthma can kill.

Asthma will kill.

I have had inhalers on and off for most of my childhood and certainly for the entirety of my adult life and know how easy it can be to forget your inhaler or lose it, or even forget to order a new one. Now this is me speaking as an adult here, but imagine how much easier it is for a child who is focused on just going out and having as much fun as they can. If that child then went on to have an attack, the consequences could be tragic and far reaching. No one should have to die from asthma, and that goes for kids as well.

When I was at school, the teacher used to keep an inhaler for every child in the room that had it (at one point there were about 4 of us and we used to club together to take them) and it was accessible wherever and whenever we needed it. But there wasn't an emergency supply if we didn't have one with us that day. I think that if there was an emergency inhaler kit in schools, then it would be saving lives and I think it is important that this is addressed. No family should ever have to suffer like Olivia's did that day. Click here to sign the petition and get this silly law overturned.

Wendy xx

Life as Normal.

I'm starting to adapt to life on the tank and it's becoming just another part of my day. I get up, check everything is hunky-dory (SpO2, Peak Flow and things like that), and then I hook myself up. The thing I was worried the most about was changing my tanks. Turns out that is really easy, I just have to take out one can, keep that running (keep the oxygen flowing) until the next is secured in the bag, then, I just have to simply swap the line leading in to the conserver, clamp it and turn on the supply. Then I am ready for my neb, tablets and to start my day. Sounds kind of complicated, but I think I am getting used to it. It's just one more accessory I have to wear!

Admittedly it hasn't been an amazing miracle cure. I am still getting out of breath and wheezy. I still can't really do too much without wearing myself out. Although, I am hoping that these respiratory symptoms I am having are just down to the cold I picked up, not another infection taking hold after being off antibiotics for a week. It could be viral, I pick up these things all the time due to a lowered immune response (a consequence of steroids and other medications as well as a natural "infective phenotype" meaning that I am genetically more prone to chest infections, something that I have always had trouble with since childhood) and they can quickly escalate from a cough to full blown pneumonia within a few days. I am vulnerable to some things, more so than others.It is just the way things are.

I do like to try and get outside as much as possible, I mean, what is the point in having a portable oxygen supply when all I am doing is staying in one place. Besides, I like to make sure everything is as up to date, paid and sorted as possible. Nothing bugs me worse than knowing that something is outstanding and that I will have to sort that out eventually, that's why I try and keep on top of things. That and it's much easier when something does decide to give up the ghost (like my nebuliser, bloody thing!) and need to be replaced. As for the nebuliser trouble, I am making the best around that by using the machines I have (my Medix in the living room and the Omron in the bedroom) and luckily I have been able to get on with things.

Worst case scenario, I would hook up my nebuliser kit to one of my oxygen cylinders and do it that way. But for now the procedure is keeping my nasal cannula on, (set to 2l/min through a conserver) and putting my nebuliser over the top. It looks daft but its how we do it when I am in hospital so if it's good enough to do there, it's more than good enough for me to do at home. I am still getting used to taking the cannula off when I go to sleep. During the day, I do often have a nap but sometimes it kind of just happens so I forget to take my cannula off! Although earlier when I did take it off, I had de-saturated in my sleep down to 93% (my target sats are 94-98%) and my lungs were less than content about it, but I am not on the oxygen for 24/7 and to be honest I wouldn't want that right now.

I am amazed though, since getting it, I have been so much more alert and aware of where I am and what's going on. I have managed to play on the X-Box and PS3 again without feeling dizzy or nauseous and I have had the focus to enjoy my games. Last night I was playing an old favourite of mine and Natt's. A game called "Earth Defense Force 2017" (I brought Natt the new EDF game recently as a "get well soon" and Easter present), the aim of the game is to run around and shoot at giant ants and spiders which attack by either spitting acid at you or webs or just try and eat you. It's a simple game and one that when we play it, we end up having a lot of fun with it. Plus there is something satisfying about standing some distance away and shooting 10 rockets at once and watching the enemy ants fly off screen somewhere. It was good to have my reactions back and be able to just play and enjoy myself.

I also saw someone in town today and they commented on just how much better I looked, even with the oxygen cannula on. There is colour in my cheeks, light in my eyes and I can talk without having to take so many breaths between words. I'm trying to wriggle around the house a bit more too so that is a good sign as I don't feel anywhere near as apathetic. It feels amazing to be back and to be me again and I can't believe it ever got to that stage without me knowing! I think it must have been a steady decline because I was fine one moment, coughing, wheezing and unable to do anything for myself the next! I never EVER want to get that bad again.

Wendy xx

Monday, 19 May 2014


After losing some pigs again this year (Kibou, Miles and Phoenix all passed away suddenly from a mystery illness which I still can't work out what it was) I adopted some new young guinea pigs as company for Tenzou, who is going to be 3 this year. I love adopting guinea pigs and I love watching as their little characters start to show, I have never met 2 pigs with the same personality and they are such loving, wonderful creatures.  I love my guinea pigs. They don't make my asthma bad and they give me the unconditional love I need sometimes. It sounds silly but at some of my lowest ebbs, my pigs have really helped me with a snuggle, a few "piggie-kisses" and a nuzzle. It makes you want to keep fighting every day and makes you want to win.

To introduce the first new pig, Bumble. Bumble is the most laid back little creature I have ever met, when I went to get them, I was holding him for some time before he nuzzled right up to me and started to lick me. I knew then that he had to become one of the family and has since done it again, and laid happily in my arms. Bumble is funny because he hides in the box and lets us pick him up with it. Unfortunately, hes a mini-pig now but the thing with pigs is that they do grow to about 4x the size of the babies right now! Right now, hes content though in following Tenzou around.

The second new pig, Tigger really reminds me of Daj (rest his soul) in the way that hes a bossy boy at times and seems to be the one who wants to squeak the most. Holding him, he likes to nuzzle necks and hide in any flap of fabric! Hes a friendly boy and likes to explore things so I am probably going to have to "guinea proof" again! He is a cuddler and earlier while the cages were being done, he sat there in my lap, being cuddled and fussed, but hes a fast runner and sometimes doesn't like to be picked up. Out of all of them, hes the only one who has sniffed at my tubing and even considered biting it!

 Then last but not least is little Scruff. When I first laid eyes on Scruff, he reminded me so much of Zell, who was a shorter haired version. Hes a nutty little thing and he likes running around and sitting on Tenzou (so it kind of looks like Tenzou has this white toupee!) but doesn't like being brushed, which as he is a longer haired pig, he will need to be brushed daily. Like all Abyssians I have known, Scruff is a vocal guinea pig and true to form, he will squeak loudly at anything.  I will probably have to watch this little one as he grows up!

I had one of the days where I wanted to push myself a bit and clear up my mess in the living room (mainly medication boxes) and even though it wore me down and I was having to neb afterwards to get my lungs to co-operate, I felt great because I was able to keep going and I saw something through from start to finish. I've not been able to do that in so long because of my breathlessness. Heck there were times where I would start doing something and then get distracted and you could follow the trail of things I had been trying to do! I am still adapting to my new way of life. I think the hard bit has been remembering that where I go, my bag needs to come too, I tried to walk off without it a few times! That must have been funny to watch!

I like to think that I am an optimistic person. I've been through so many things and overcome them, heck I have had people throwing nasty comments and accusations my way (who hasn't?) but I have kept going because I held on to the simple truth. I know what is what. I know my conditions and I know the effect they have on me. No one has the right to judge me or say anything because they haven't walked a mile in my shoes. Only a number of people know what brittle asthma is like and that number is nearly nothing compared to the people who don't. I always say to people that unless you can say you have experienced what I have, then you can't look down your nose at me. There are self-righteous people out there who will only ever see the world their way (despite what anyone else says) and there are people out there who will make nasty comments because they feel it's their right to do so. I don't let them get to me. They have no bearing on what my life is or how I live it. 

Wendy xx

Sunday, 18 May 2014

Easy Sunday

Its another bright, sunny day. And yet again, I dragged my poor carer out for a walk because I can't seem to sit still. I just feel so damn alert and with it! Its been so long since I was this aware of the world around me and before, I had this kind of listless, sleepiness about me. Like I knew I was somewhere, I just never cared as to where. I never realised it before. Maybe it was because when you live for so long in one way, you stop noticing the effect it has on you. I never noticed things like attacks because they were just "one of those things" and they were bound to happen at some point. I was so poorly and I didn't even know how or why and what scares me most was how much I just soldiered on despite it all.

It was kind of like when we got the old bed out and the new one in. I had gotten so used to it that I never noticed how bad it was for my back and how much the damn thing stunk! I can understand why it smelled the way it did and it was old even when we got it, but it did contribute a lot to my poor health and the subsequent consequences of that. The wood inside was rotten and when it finally gave way, it was probably a sigh of relief. I thought that was going to be the biggest change to my life and  that only small things were going to happen. OK so I was wrong about that. But I am glad that I was wrong because these new changes have shown me that I can still enjoy life, even if I have to do so with some equipment and other things to help, it's OK.

Admittedly my enthusiasm got the better of me and I did manage to tucker myself out a bit. Not sure how it came about but I went to watch something on my laptop and kind of fell asleep. I must have woken up at some point because I had taken of my cannula and turned my conserver off (basically the best time for me to have "cannula breaks" is when I'm sleeping, so I have my o2 off at night and well, it makes sense to take it off if I'm going for a nap, unless of course I have been really struggling). I'm getting used to using the equipment and well, I find some of it really clever. The conserver I have for example, it is a nifty little gizmo which builds up 50PSI of pressure and releases oxygen when I start to take a breath in, delivering the equivalent of  2l/min without wasting 2/3 of my tank through continuous flow. I think it's a clever thing and its how I have managed, over the course of 4 days, only used 3 of my cylinders in 4 days. Of course, I will be calling up tomorrow to have some more delivered soon but I am getting used to it all. I think it has been a learning curve for me and well. I think it has started to change my life for the better.

Being on oxygen, the last 4 days have been amazing. I have been drawing again, going out during the day to do things. I have been so much more alert and aware of the world around me and I noticed just how much happier I have been. I forgot how much we take for granted and how much we miss it if we can't do something anymore. People have been so kind to me while I have been getting the hang of my illnesses and how that have changed my life, in some ways for the better, others not so, and how people have helped me with simple things, whether it's holding a door or helping me with my shopping on the back of my chair. I was scared that people were just going to stare at me and make me feel even more like a freak when I went out and it was such a shock to learn that it wasn't going to be like that at all. Every so often, I got the slightly embarrassed "sorry I didn't notice" look when I ask someone if I can just slip past, but no one made nasty comments or gave me filthy looks. I was, and still am really happy of that.

I'm learning to just let things be as they may and accept that the past, as "fun" as it would be to wallow in the whole "he said/she said, he did/she did" bullshit, I have better ways of spending my time. I find people who just live their lives to wallow in their own misery are pathetic and people who only ever just try and blast others because that is all they have are just tragic. People who will never be happy because they won't let it go and let themselves move on. I just keep moving forward because, well, I have to.

Wendy xx

Saturday, 17 May 2014

Defying Gravity

It's really been a lovely day today, nice to have a roll around the market and watch the buskers (there is a talented kid who plays guitar on a Saturday and I take great pleasure in hearing him) as well as other performers (there was an event in town today with a choir singing). I love stuff like that because it reminds me of how alive a town really is. Whether that be with people performing, children playing and generally everyone being happy and enjoying the lovely May sunshine. When the sun is out, it seems that everyone seems more cheerful and well, things feel so much happier.

Over the years, I stopped being such a social person. Unable to face the fear of having an asthma attack out of the house or having the energy (or puff) to actually go out and do things. I had become a bit of a hermit and for a while, I did develop agoraphobia (due to reasons, I don't really want to get in to) and became afraid because everyone saw me as this beaten down "nervous girl" who was constantly walking, head down and trying to be as invisible as possible. I then just became someone who spent most of their time either hiding in the bedroom or sat watching everyone go by from the window. It's not a happy state of being and it certainly isn't as pleasurable as going out and meeting new people and doing things I can enjoy. I don't have anything (or anyone) to be afraid of anymore and I feel confident that as long as I have my chair, my nebuliser and my oxygen tank, that there is nothing I can't do and nothing I can't enjoy.

The things in life that threaten to hold us back, be it from illness or environment are things we should try and work around. I remember once when I was at one of my lowest ebbs, a good friend reminded me that life isn't measured by the things we do for the sake of doing, but the things we do because someone told us we couldn't. That person is still walking (albeit with a cane) despite being told that around 20, he would be wheelchair bound due to his arthritis. I didn't believe it back then. I didn't see that there was going to be a light at the end of the tunnel and that there was something we could do. I let myself suffer because I was too afraid to challenge the people who told me "this is it now." and that no other options were available. I had to make a noise and tell them I wasn't prepared to lay down and take it, going higher from an underling to speaking with one of the hospital's leading consultants.

My consultant (Dr L) has been such a wonderful help. He came to see me on the ward a few times and told me what his plans for my treatment were. He told me that my body was basically wearing out and after years of chronic asthma and repeated infective exacerbations, my lungs were only recovering to a certain point and that they were starting to fail on me. The end result was that I was alright, as long as I didn't try and do anything. Which meant that even simple things like going from the sofa to the bed would leave me tired, gasping and my SPo2 (the saturation of oxygen in my body) was dropping to around 89%-93% depending on what I was doing. You can only imagine what that was like from a "Quality of life" standing. Part of the reason I wasn't blogging much at that point was that I really didn't want to post "Well, today I was in bed all day because I couldn't even move from one side to the other" or "I am in so much pain right now..." because that sort of thing really is depressing and to be honest, I wouldn't want to read it, let alone post it so that others would have to (and the people who get off on the idea of me suffering, why the hell would I give them the satisfaction?).

I am hoping to start moving forward with life and enjoying it to the fullest. Things are a little uncertain still but I see that as something to overcome, not something to define me or make me miserable. I don't have to accept limits because someone says I have to and in a way I am glad that I went through some of the things I did, because it made me that much stronger, wiser and able to cope with things. Nothing makes you stronger than having to live despite of limits. You just have to be careful and responsible in finding out what your limits are and keeping within them. I won't be running a marathon or walking to town and back, but even if it is just wandering around the house or going to town in my chair, that's something.

Wendy xx

Friday, 16 May 2014

Life is for the Living.

After being home for a day, it has to be said, it feels good to be home again. I never realise how much I miss it until I get taken out of my home environment for however long it is. Its always the little things I miss as well, like lying in my own bed, long relaxation in the bath or cuddles with my pets. I am prone to homesickness when I have to be away from home and I always feel a bit wary about going in to hospital (usually because of previous occasions which were very stressful and the memories of which are still kind of painful to this day.) but this time around I do feel like things are changing and I am moving forward again and although there have been so many setbacks and things that have shaken me deeply, I think I am making progress.

One of the worst things about being as poorly as I have been is that I am pretty much limited in what I can/cannot do. It's not easy to adapt to living with a disability for anyone, but when you go from not having any disabilities to having a lot all at once, it can be really scary and it is normal for someone in my shoes to sink in to depression, heck I know I did. I tried ending it many times because I didn't think I would be strong enough to carry on, it was only when I thought about how others cope just fine, I couldn't help but hate myself for being so selfish and wasting what life I still had and I had to do something important in order to recover, I had to remind myself of everything I'd overcome in the past and accept that the way things are is simply the way things are, some things you can change, others you can't. And sometimes you have to just take it as it is. 

I went out with my oxygen for the first time. I was nervous and worried about people staring or making nasty comments. Ignorance makes people cruel and there are people out there who judge others and say nasty things or glare because it's easier than trying to understand. The daft thing is that if people ask me about it, I will explain it. I'm not on this through choice or for any other reason than my respiratory system is damaged and is slowly failing. There may be something we can do eventually, but until then, I'm making the most of my time. Out of my whole time out and about, I encountered so many people who smiled politely and were understanding (as well as a lady with such a sweet little boy whose smile was infectious). I only crossed paths with one disapproving glare, tutting and that was all. I think my confidence is growing more and more with every day.

It was nice to wander around and just enjoy the day. Usually it runs me down, even with the chair and I'd have to sleep to regain my strength. My focus has improved too, turns out that when my levels drop too low, I become unable to think or concentrate on anything, I become sleepy and because it takes so much effort, I was pale, clammy and felt like I was constantly having an attack. It just felt like I'd had all my energy sucked out of me and I do think that had a negative effect on how I was feeling. The problem was that I had gotten so good at pretending that I was fine and I think it became harder to deny it. The weird thing is that we didn't need to ask or push the doctors to help. This was decided by the doctors on Monday and I was told that I was going to be going home with it and during my active hours, I have to use it. I don't sleep with it though and I take it off when I'm not really doing anything. 

I've heard horror stories of people being given home oxygen and wearing it 24/7 against what they're told and it causing more harm because they didn't need it. I guess a little anxiety about new treatments is normal, having known that a lot of treatments are a "one way" street and once they start then that's kind of it and it can be a slippery slope. I think the main thing though is that I am still alive and I am still pushing to be as happy as I can be. Be that with a little extra help.

Wendy xx

Thursday, 15 May 2014

Home Oxygen

Well, my clinic appointment last Wednesday ended differently to what we were expecting. Or more like how I thought. I was expecting to go in, chat to the consultant, told to carry on as we were and be on my merry way. What ended up happening, because I was close to things getting really bad, was that I was taken right over to MAU triage, rushed to be urgently put in a bed (I was hypoxic, exhausted and generally not a well girl). By morning I was settled on a proper MAU female bed, given my treatment of steroid injections, nebs and oxygen. The asthma has calmed down a bit but I'm still not right. Don't get me wrong, I'm better than I was pre-admission but I'm only really recovering to a certain point (probably about 70% of how I'd have recovered about 5 years ago). Unfortunately there is a limit on how well I can be and as hard as that is, we have to accept it.

I saw my consultant yesterday, he has set up for me to have a supply of oxygen at home to use as/when/ as often as I need it. I'm gutted that its come to this, but after 6 years of uncontrollable, severe asthma, repeated severe infections and everything else, it's no surprise that my lungs are scarred and are struggling to keep me properly oxygenated while I live a normal life. I look back and wonder sometimes, had I been allowed to recover properly when this all started and bullied against getting help sooner, would I have gotten to this point? They refer to it as early stage type 1 respiratory failure, the sad thing is that as I get older, my lungs are going to get weaker. Eventually, I won't be on short burst or ambulatory and will have to be on my oxygen more permanently.

I have felt the degeneration of my lungs for some time. I don't think I'd be able to do half of the things I used to do at college, or riding my bike to college and back. I used to love going out to the pub on a Friday, nightclubs on a Saturday and trying to sober up for college on Monday. Typical life for a typical young person really. I only noticed that I started to slow down when walking from the bus stop to the college started to become something of a challenge. As time went by, I became less and less mobile and I never noticed how much I was fighting until recently. The things you take for granted, like being able to walk from bed to the bathroom and back or washing and dressing yourself, those are the things that when you are limited, you really feel it and it really starts to take away from your independence. 

I've been home for about 5 hours and I feel better than I have in months. I have energy, I want to move around more and I am no where near as sleepy as I was. I was having trouble concentrating on anything for more than a few minutes at a time and I was generally not coping well. What surprised me is that I didn't even have to suggest a home oxygen supply, the consultant said that was what he wanted to do right away and would have had it arranged for after clinic and I really can't understate the profound positive effects it has been having on me. My heart rate is slower (now because my lungs are getting some support, my heart isn't working as hard) and I am generally feeling so much better. I managed earlier to walk from the sofa, to the bedroom, run a bath and enjoy a nice soak while being able to breathe in doing so. 

I could bore you with the things I've been able to do since being able to breathe properly, but I think it would be a bit moot, instead, I am going to go out and enjoy a new lease of life and hopefully better health.

Wendy xx

Thursday, 1 May 2014

Waiting and Worrying...

So, these last few days haven't exactly been the best in terms of my chest. This infection I have been trying my hardest to shake has really been kicking back and I know that had it not been for the extensive therapies available to me at home, I would probably be back in hospital again and back to waiting around for hours just for my pain meds or for something to make my chest feel less tight and wheezy. It's a completely different routine to me and at times I will admit it makes me feel uncomfortable and have been prone to a "fight or flight" response. The truth of it is, I just don't like having to give the reigns of my care over to people I don't really know and that is hindered by naturally distrustful nature (my trust is something that those close to me know has had to be earned) and not being able to be as private as I would like.

I don't like being so "on show" as you are in a ward. You're in a room with up to 5 people who you don't know, none of them know you and some of them will turn their nose up at you if you don't fit the part. I do try and be as polite and friendly as I can be but some people just make you feel like nothing is ever enough so I tend to shut myself down with those kinds. I never ever feel comfortable with sleeping in a room of strangers so I spend most of my time on my tablet reading or playing on the internet, until I can't stay awake any more and then I have to get some sleep. As a result of that I tend to sleep in the day (after a 6AM start, who could blame me?! Never was a morning person) and maybe watch a film or something. Sometimes the best thing for me is to find a distraction when I don't feel well, but there are times that that doesn't actually work for me.

These last couple of days are suggesting that things are going to go down again, but I am working my hardest (as is Natt) to make sure we can put that off as long as possible, preferably, I want to have made enough headway forward with the Ciprofloxacin when my MAU consultant appointment rolls around next Thursday otherwise the doctor is going to want to keep an eye on me closely for a few days. Last time I was in, luckily it was only 2 days, but the time before was actually closer to 2 weeks and by the time I got home, I was just so happy to be back in my own environment. In my own environment, I can sit in bed, watch stuff on my laptop (without the bother of headphones) and generally do what I like to do. I don't get poked and prodded every 4 hours (the most Natt really gets is a peak flow, check my sats and maybe check my temperature). That and if I fancy destroying some giant alien bugs, so be it!

I know I won't ever work again, not unless we could stablise things to the point where I wasn't admitted around twice a month and don't know how/where I'll be between days. Don't get me wrong, if you offered me a job that I could get to on my wheelchair, wouldn't get picky that I could be off work for weeks at a time and was something that I could actually do, then I would do it in a flash. I don't like being on benefits but understand that its a necessary evil and not something I chose for myself, more something I have to do because there really isn't a lot more we can do. I try and make the best of my days and fill them with interesting and stimulating hobbies. Some days I can do more than I can on others. Some days I can sew for hours and feel relaxed in doing so, other days I just don't feel up to much more than curling up and sleeping. It does all depend on how my chest has been really.

All in all though, I do try and keep things positive because by trying to just get on and live your life in spite of anyone or anything that tried to hold you back. It can be hard sometimes, I don't ever doubt that and heck, I have days where I feel low and like I want to throw in the towel and fall apart. But it's that voice in my head that tells me "No, not now. Not ever." that pushes me forward and makes me realise that in hurting myself or ending my life, I was just being incredibly selfish and thats something I never wanted to be. And you know what else? By making myself suffer, it means that all the people who wanted to do me down have won and they don't deserve that.

Wendy xx


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