Getting My Head Around It

Needless to say, I have had some restless nights recently. I don't mean simple stuff like waking up and needing to do the simple stuff. Some nights I've been caught full on sleepwalking and sleep-cleaning. I am struggling to get my head around all of it. I mean, who wouldn't? Its hard knowing what we know but at the same time, I'm clinging on to something that someone can do. This can't be all there is. It just can't be. And I will be willing to try anything if it meant a life off the o2 leash and not having to face the hard part of my condition. I'm still struggling with the fact that this could (and should) have been taken seriously so much sooner had that "doctor" taken the time and effort to do more recent tests instead of making me feel like crap and like some kind of weirdo. I guess its all well and good when you get to walk away and not see what your arrogance and stupidity (taking me off 3/4 of my meds without testing is about as stupid as someone gets, especially when they didn't acknowledge the effect it had. Luckily I demanded a 2nd opinion because it was agreed that was a really bad move) means for someone.

I hope they take comfort and solace in that they don't have to watch me go through this. A life with lung failure is hard. Not to mention how hard this has hit my family. The fact that this could have been avoided doesn't give me solace or comfort. My asthma could have been managed better and much sooner had the right tests and care been given, meaning I wouldn't have developed scarring on the lungs (pulmonary fibrosis) which is complicated with infections. I don't know exactly what's going to happen now. Maybe one day we'll get a miracle and I'll get the gift of new lungs, ones that work properly. I'd take nothing for granted if that happened. But for allowing this, I think the people who should have done their jobs should be held accountable for that. Because right now, my family and I are going through hell and that's not right.

Nothing is going to fix how we feel either. My personal feelings here are the feeling of being cheated. I see people and they get to live long lives however they like and I'm on a knife edge. There have been times where I have honestly felt like this was the last time and how I got through was nothing short of amazing. I feel disappointed that the "doctor" who could and should have done something or safeguarded me failed. I'm angry because I feel so trapped. Powerless, because I can't put this right. What I'd like is a proper apology and for that "doctor" (inverted commas because doctors are supposed to help people, this guy didn't and he let me slip through the net and I've suffered because of it) to stop practising. If they did this once, how many others has he done this to? How many families have been destroyed because of lost loved ones because they weren't taken seriously or helped?

The Alex has a bad reputation and if this kind of thing is accepted then frankly they need to buck their ideas up. I want to know why this happened and why my previous complaints skirted around the fact that someone messed up, they didn't do the right tests when they should and missed a vital chance to help me in favour of outdated results (off outdated machines) which were complete contrast to what was presented to them. I also want to know why parts of my medical records "disappeared" over Christmas and I wonder if the fact that these were totally ignored or hidden away (probably because they'd have proven my complaint and made the hospital look bad) is trust policy? I just want the truth and for this practice to stop. I don't think mine is the only case where medical records are destroyed, changed or "misplaced" because of an inconvenient truth. Save the Alex? Save it from itself!

I was discharged in pretty much the same state I was admitted in, the only improvement was that they started getting the infection under control and because I showed a slight improvement, the treatment got withdrawn. Again. Its a week since then and the painful breathing is back and I'm starting to cough more. I have an appointment with the doctor this week so maybe they can recommend something other than "wait and see". I do have emergency antibiotics on hand but I'm going to get a sample before starting (preferably before my appointment) so we can see what we find. What we do know is one thing, I shouldn't have been discharged.

As for the complaint? Well I will get this exposed and sorted because mine is a life that has been severely affected by it and well, I don't want another family going through it.

Loves
Wendy xx

Justice?

The hardest thing I have ever done was to tell my family, particularly my mum, how dire the situation with my health is. I'm going to get through it, with their love and support as well as amazing friends, a boyfriend who loves me and of course my adopted brothers and sisters. My carers have been fantastic since I got out, my primary carer is someone I feel like I can talk to, he's old enough to be my dad but I think that helps too. I never realised before how much nurses and care workers have to do and how it must take a certain breed of person to do it.

Due to my condition, I am a frequent visitor to the Respiratory High Dependency ward, one of 2 respiratory wards at my local hospital. The staff on there are lovely and without them, I don't think I would have coped with the bleak news. The woman who did the lung function tests was lovely too, she remembered me from 10 years ago! We spent the time having a good old catch up and doing the actual tests. I don't know what I was expecting, perhaps I was desperate for "normal" results so that I could get back to normality and not have to face it. Knowing your condition can be daunting and knowing something, you can't just unknow.

The nurses all gave me comfort, a shoulder to cry on when I was sat there on the bed trying to take it in. I knew it wasn't great and I knew my lungs were getting to the point of not being able to heal anymore. All I could think was "why?" Its all anyone thinks when this kind of thing happens isn't it? I felt angry too. This is harder than anything I've ever had to contend with. The thing that annoys me most was that had it been dealt with better last year, perhaps by now I would have been better controlled but for what ever reason, the local consultant didn't seem to be all that interested in that, to be honest I don't understand it myself. I do want to task that part of it further but for that reason alone I'll not discuss that here. Not yet at least. I would love to name and shame the doctor whose lack of basic common sense and the trust that let me down. I would love it for them to experience what my day is like and then have them understand what they did by becoming fixated on how many meds I have and not testing to see what the extent of the damage is! I'm hoping that lessons will be learned and no family will have to get the huge shock mine has had again.

Because, let's be fair here. This doesn't just affect me. This has also affected my family, friends and everyone I hold close. They're going to have to see me get ill and they're all as powerless as I am about it all. I can't even begin to understand how my mum feels, she gave me life and did everything as I grew up, no mother should have to watch their kid suffer and have to face a very real prospect that one day, they may have to bury their child. So this isn't about just me, this is about all of us and knowing that it would have been prevented had the consultant acted sooner isn't really too much of a consolation prize. If anything I think it makes it worse and its just the tip of the iceberg, this kind of thing is happening all the time.

Asthma isn't being investigated properly across the country and its not taken seriously by doctors. The annoying thing is that 90% of asthma deaths could (and should) have been prevented had doctors taken it more seriously. 3 people die from asthma each day in the UK and its those families who are torn apart, and all for the arrogance and backwards thinking of doctors who are more interested in targets and saving NHS funds than helping people. I find it shocking and disturbing! Going in to hospital shouldn't feel like taking a huge gamble, you shouldn't be left wondering "if I go in, will I make it back out again?"

If it wasn't for the consultant's arrogance. And no. It wasn't Dr Brocklebank, he was one of the few who tried helping me at Christmas. We seem to have an understanding and we actually get to chat every so often. Its funny, I think that I have taught more doctors about brittle asthma than they have learned in books. I'm something of a living legend (or as Dr Brocklebank puts it, an expert at what I know) and people who hear my story and see my condition first hand are interested in what this means to someone who is young, vibrant and generally tries to make the best of it. I don't think I'm particularly strong or brave, I just don't have the time to waste in being down all the time. Not to say that I don't have days where it all piles up and I have to let it out. I do have days where I want to scream and scream until my breath is gone and I curl up breathing hard and tiredly.

I'm not going to stop here, I need to get justice for this or make a difference to save a life later on. If I can help one other person get a proper diagnosis and treatment, then I have done my part.

Loves
Wendy xx

Medical Limbo

I was reading an article recently (you can see it here), about the reasons people go to visit their GP and some of the more ridiculous reasons people go to the doctors. Some of them are just shocking and the unnecessary waste of resources and GP appointments to a system that is already heaving under the demand, especially with an ageing population, people living longer than they did 20-30 years ago and the health demands that throws up, and it means that sometimes, the people who really need an appointment end up either waiting for weeks or getting so sick (or sometimes so fed up) that they just attend A+E. Some of them are then kept in hospital for prolonged treatment which may not have even been needed had they accessed the appropriate care at the appropriate time.

At my GP surgery, a routine appointment can take up to 2 weeks to get. I'm lucky that I am under a "priority" scheme which means that if I call up the surgery and explain who I am and what I need to discuss, they will try and see me sooner than if I was anyone else. This idea of a priority scheme is a good one I believe because it means that people, like me, who have severe chronic illnesses which can (and often do) get worse very rapidly, can access the care they need quickly and intervene before things get too serious. The problem with me is that I have a habit of getting used to a certain level of "crap" that I sometimes forget that what I am experiencing isn't "normal" circumstances and it isn't a regular way to be.

I keep trying to think of why I do this to myself now. Before, there were reasons I think I never really got past them. I haven't been in that situation and the memories should be allowed now to fade. I won't get punished for seeking help. I am worthy of help. I need to stop convincing myself that I'm some kind of hypochondriac. Whenever I go to the doctors I always have a genuine problem and they always give me something to try and help that. I do think that sometimes the GP wants to hit me with a giant mallet with the word "NO!" on it whenever I start doubting myself. I spend most of my days and nights managing the routine of medications, monitoring, physio and other things, on TOP of having a life, doing "normal" things like going out and doing stuff. You know, fun stuff.

I had a lung function test done. It's interesting because before no one was sure what was happening to me and there had been times whether it was contested as to whether or not I was asthmatic (this was years ago mind, I think it was that degree of "hey, maybe it's not..." that fuelled a lot of my more reckless behaviour about the whole thing) and I think now it has hit home. It has kind of given me a mental bitch-slap to not take risks with no reason. I knew my lungs were struggling and I knew my function wasn't going to be upwards of 60% which it was less than 5 years ago (even more staggering that 10 years ago I was near 80% function) and now I have about 46% of my lungs functioning, off oxygen I can't keep decent saturations anymore and there are days when I am confined in a body which is slowly failing. My lungs are slowly failing and I am dying as a result. I find that hard to admit and take in to account. It scares me and I hate knowing that one day something is going to happen. The uncertainty. The fear. I feel cheated and knowing that there are people out there who made me miserable and it is cruel how they will get to go, live long lives and do everything they can and knowing I may not make it to 30. It doesn't seem fair.

I guess that seeing it all there, in black and white really hit me. Before there was a degree of "it could not be so bad" and possibly some cure on the horizon. I never realised how hard I clung to that. If there was another explanation, maybe there would be more we can do. But to be told that in no uncertain terms that there is no getting better now, all we can do is try and make it easier but there will never be a day when I don't need to take meds or be on oxygen. This is lung failure and until it gets too bad, all we can do is make the best I get (which isn't actually good at all) work. It is the hardest thing to return from an admission and only be ever so slightly less unwell and knowing that really there is little point on going at all because we have the barriers we have. Its surprising that as soon as I could, I let myself finally fall apart. Natt had to hold my limbs so I wouldn't harm myself because I felt so upset, angry and wanted to make a person suffer, but would that fix my suffering? No.

I don't know what is going to happen. I am on maximum therapy for my condition (step 6 ) and  there isn't really too much "wriggle room" as I am on everything they give. Well, I will see the expert again soon but it makes me worry because I don't actually know whether anyone can do much more for me. We'll have to wait, hope and see where we are when they get there. As for now, I'm in limbo, waiting to know what they can do, if anything.

I'll be alright, I'm just feeling a crash, right?

Loves

Wendy xx

Huh?!

Well, I'm back in hospital again. I am going to admit to you all (as well as publicly apologise to the sensible ones who would have had me here sooner) that I probably left it too long. Fear of a place broke through my normal, logical thinking. It was great over Christmas but I was still rattled by past experiences on medical wards, over Christmas I was in the surgical ward as it was the only place they had. I don't think that anyone would choose to be in hospital and I should definitely not choose to not go when I need to. Even if I feel scared or not safe.

So yeah, I'm sorry for worrying everyone.

I need to re-learn it. I need to learn when to intervene and what isn't normal. Or how far I can go before needing help. Maybe part of me forgets that even though I have the thins I need to manage, it isn't always going to be possible to fix at home. Does it scare me? Yes. I don't want to get to that point where I spend most of my day and night in a place where I really don't feel safe, comfortable or relaxed. I don't know why. I just feel like I can't let my guard down here and I end up trying to justify my staying out and hiding away so now one has to see how I'm feeling. Something I have always done. I need to work it out and maybe find out how to cope. I seem more settled tonight, everything is set up and ready with meds. Had a new IV put in because my one went pop and now pondering whether to watch a film or go to sleep, my IV has finished so I can't lie and watch it. I did watch a film but seeing as I only have what is on my hard drive now or Netflix so its a little limited. I mean there is plenty to watch, just not my usual massive stash of DVDs, Blu-Rays or on both hard drives. I think choice spoiled me! I kid obviously, I have enough to keep me occupied and not pulling my hair out from boredom, I have been in that situation before, nothing to do and couldn't sleep!

Its not been too bad as yet. No one has had any stupid ideas when it comes to my meds, there was a mix up at first but we sorted that quickly and the slight issue with my IV but that hasn't happened again.Things seem pretty balanced out for now and it looks like I may be here for a few days yet. I don't like the idea (who would?), but if it gave me the chance to get better then I have to just relax and let it happen around me. I think we need more in place for long term, as I seem to have "flares" of the infection regularly and if we could manage it better then I would do that. It's not that I have any personal issue here, its just that I would rather be at home with my own surroundings and relax than take up a bed here. The nurses seem to like me though because I do most of my stuff myself (apart from meds) and I don't constantly call them away from their work. I have been on wards where drug rounds for 6 have taken 2 hours because of patients spitting meds out, violent outbursts and a nurse being called away by someone who wants to be waited on hand and foot.

I think some people forget that a hospital isn't a hotel, care home or spa.  A lot of patients whose families are selfish enough to not want to allow them at home are left in a place where they have vulnerability to infection and subsequently end up dying in hospital with their dignity stripped away. The ones who want to be pampered should remember that they are in a ward with others and that they can't be pampered just because they want that. I do think though, there should be a place for younger people in the hospital as for someone who is young, it is a daunting, lonely place. I don't mind older people, the wealth of their life experience is amazing, but its hard for someone my age to feel less frightened or isolated. I'm always the youngest person in the ward which is weird because if I didn't have my phone or laptop, I think I would climb the walls by now.

I want to go home but the team are trying to work out what the long term plan is here. The problem is, we need to know what to do to keep this from happening over and over again, I'll finish my antibiotics tomorrow but I'm not really much better... seems like a load of stress over nothing really. I feel like we're putting a sticky plaster over a broken leg sometimes and the affect on my quality of life is shocking. It really is. The reality of my condition is that on my good days, I can walk around and do things carrying my oxygen around and then on the bad days, I feel like someone has beaten me all over my chest. Knowing there is a large possibility that the main issue is my asthma is as it is. Its hard to constantly manage my asthma because it is so varied between days. Some days I can be alright and doing what I have to. Others I will be out of it and sleepy. No one seems to know why this happens and what to do about it. I confess, its not exactly what I wanted for my life, but there is no use crying over spilled milk, it'll probably never be perfectly better. It sucks but I am ging to try and remain as positive as possible because if I do keep my chin up,maybe one day things will get better and maybe one day I can walk more than a short distance, but I suppose it is all about perspective isn't it?

I think my biggest worry is for the long term. What is the long term prognosis and is my future really going to be completely uncertain? Will I always be this way or will they manage to fix it or make this settle down? There really are no ways of finding out just what the long term effect of all this is going to have and I guess the uncertainty is what scares me the most. That and my fear that I will never be out of this place! I think I'll just have to take it each day at a time won't I?

Loves
Wendy xx

Coping

Not really had a good weekend as my chest has been an absolute nightmare. I guess it says a lot when the carer comes in and I'm wheezing and very subdued. Normally I can be accused of being a rather lively character and when I'm comfortable around someone, I can be chatty, bright and generally enjoy being around people. I think I'm still being kicked around by this nasty chest infection. Its a stubborn one to be sure and I'm not sure what happens next. I guess the best thing to do is prepare for the worst but hope for the best. I won't go in to too much detail due to personal safety reasons but we'll find out soon enough. I saw the doctor yesterday and they have told me that it's going to be a hospital job if things go downhill quickly, not trying to manage at home when clearly I can't.

I've been working on more of my illustrations, practising a number of blending and shading techniques. Its funny, when I used to rely on my computer to do the work of editing, I never realised that I was sweeping over a skill I never knew of. The only reason for it I think was a total lack of confidence and a complete mental breakdown. I'm not going to revisit the breakdown and subsequent self harm as a result (I do still have urges to cut but I find I have people to talk to to calm me down and help me not to) but I'm out of the worst of that and my Bi-polar is under control. Its fun when I look in my sketchbooks and I can see a definite refinement of style and control over what I'm doing. Its weird, I started drawing again from the basics, working with pencils then with coloured pencils and finally to proper materials, the higher end stuff which has to be specifically ordered. I wanted to get to the stage where I felt I deserved to use better mediums rather than cheaper, inferior ones. Each pen set I got was a reward for doing something a little better and it made drawing such a pleasure!

Bi-polar is scary. One of the things that makes it worse is Prednisolone at high doses, but unfortunately its one of the things I need because of my asthma. Without the steroids, my asthma would be worse and it is kind of a balancing act between controlling my asthma and not going in to a psychosis state. I know what happens when my mind goes off because no matter how I try, I can't stop my mind or my thoughts, but make no mistake, my mind, my memory and my intelligence are never affected. I'm aware of everything but sometimes its hard to get that nasty, scary cycle of thoughts. Some people think that mental health makes you stupid and that having a mental disorder makes you less of a person. I've been though a lot of things and believe me, to have survived and still be here and I don't take anything as a given. I don't see myself as a victim. I don't see myself as this perfect, whiter than white being. These things have made me stronger and wiser. I'm not a superhuman, I just can't let myself fall in to a state of feeling sorry for myself. I find people who do it pathetic and as a result, I don't give sympathy, nor do I want it. Sympathy is for the weak.

I think my drawing helps me to cope with my illnesses. I've gotten to a point in myself that whenever I feel upset or angry, I have ways of using the energy that would be wasted on something destructive and made it positive. I try not to waste any time on moping or getting back at people because to be honest, if I'm done with something, I'm done. I don't care and it honestly has no bearing on my life.

I come to this following an incident with a certain person who after 4 years needs to seriously back off and leave me, my friends and my family alone. I am currently working to secure a restraining order because I feel that this person will not get the hint unless legal action is taken. If someone really enjoys trying to get to me, then that is their choice and they are the ones whose pathetic behaviour will trip them up in the end, the only time I will even acknowledge a certain person is if I hear from anyone that my privacy has been violated (e.g. my personal information such as my home address being published on a public domain, anyone can put that in to Google and turn up and threaten me, it has happened before and I would rather not have it happen again) and it will be dealt with by the right authorities, other than that, I honestly don't ever mention or do anything that would almost entail giving them attention. I have also asked my friends to not even speak of me to them and if they are ever targeted for anything personal to send me any evidence and it will be added to the rest and action will be taken. I learned quickly that the best way forward in this is to ignore them and make a point of not engaging in any communication in any way, whether that is direct or third party. I don't want anything more to do with this person and I would have thought that the first instances when the police were involved, they would consider the matter over and that would be that. I know they will try and contact me again, but now it is just adding fuel to an already blazing fire, so my last words on that matter are, consider this as a final warning. 

Back off. Leave me alone. I am not interested in any correspondence with you in any way, shape or form. I have my own life and have moved on. The only reason I am even mentioning this is that I am sick of the childish, playground politics and I don't want to be involved with any of it. 

Loves

Wendy xx

Numbers

One thing that people ask me about is the readings and numbers I have to check and keep an eye on and what those readings mean. Taking readings and clinical measurements is important when it comes to monitoring and managing a condition. Certain ones can show how serious things are.

The most important reading that any asthmatic should know and measure is peak expiratory flow. This is a measure as to how well your lungs are working at any given time and can point out whether things are suddenly getting worse. It is a reliable tool to show how well the medications are working rather than word of mouth. Its measured in litres/minute and a reading is taken by blowing as hard as possible in to a plastic tube or meter. I use an electronic meter device called a Piko-1. I find it more convenient and reliable than the plastic tubes you get from the doctors.

For someone my age, sex and height, a normal value would be 450 l/min. My personal best is 400l/min when I am well. My 75% mark (which indicates that I am starting to become unwell) is around 300l/min. Usually from here, I have to start being cautious and keep a close eye on things. If it goes below 250l/min, this is where we really start worrying and look at seeing a doctor asap. My 50% mark, anything below there is considered "critical" is 200l/min. Usually if things fall below there, I'm going to start showing signs of slowing down. My oxygen levels become unstable after the 150l/min mark and the usual protocol is to nebulise first and if things get worse or I drop suddenly, call 999 and get an ambulance. This is the point where things start getting life threatening so calling an ambulance is more than appropriate.

Calling an ambulance isn't something I take lightly. I'm not the sort or person who calls them for little reason and when they are called, they are always the first to say that I did the right thing, if not a bit later than I ought. I know a lot of people would say "its only asthma, why are you calling an ambulance out? They're for life threatening emergencies" and to them I say "my asthma is a life threatening emergency. Had I not made the call then I could have died." There's been times when the person who was with me has had to be warned that either an intubation maybe on the way or that there was a chance that I could die. Its a scary thing and knowing how close it's come does tend to make me worry but I try to do what I can.

Over the last few days my peak flows have again dropped to below the 50% mark and although I'm keeping on top of it, I can't deny that I haven't been at all well. I've been sleeping a lot, barely interested in food (its been a recent worry that I've not been asking for meals due to no appetite and my breathing has been worse) as well as a cough that's become quite weak. It'll be alright though, I know my limits and when things are getting too much I know what to do. Although I am really hoping it doesn't come to that.

Loves
Wendy xx

Enjoy the little things..

I've been working hard recently on my drawings. I find drawing so much of a positive use of my time and money (I admit I do shop for the high end, decent materials because well you get what you pay for in quality, plus cheap stuff never looks good anyway). It gives me something to work on and when its done, it is heartening to have someone look at your book and enjoyn what they see. It makes me feel good and no one can ever take that away from me.

Right now, my project has been drawing the cute Pokémon characters I've come across in the game. I'm playing Y/X at the moment (I've completed the story of X admittedly) and I have hundreds of these cute creatures. When my carers come, I do like it when they ask if I've drawn anything new. I'll never be a manga drawing master but I'd like to think my work is at least making people happy. The only thing that bugs me is that the alcohol based markers I use (I use Letraset Promarkers) are a bit heavy on my chest. Its a shame really because the colour laydown is so smooth and they blend well. (Colourless blender pens, probably one of the most important as I use them to blend lines, shade and generally do with my hands what I used to rely on digital touch ups to do.) I do recommend them even if they are a bit pricey. As I say, when it comes to art equipment, you get what you pay for and these pens are brilliant.

I'm lucky to have something to just do for fun. I couldn't imagine what it would be like to not have my own place to belong and make my mark on. As I've often said, I may not be able to do much but I do like to do things properly. My lungs may be failing but its not going to mean the end. One day I'll get some new lungs and when that happens, I'll carry on making my life as good as it can be. I don't mope about the past, to be honest, I don't ever give the people who hurt me the satisfaction in even being in the background of my life. They don't exist in my life. They don't deserve to have any part of the weird and wonderful life I have and they don't deserve to make me feel miserable. After all, no one can make you feel inferior without your consent. Besides who would choose abject misery over the chance to enjoy life. I choose to live my life and do the things that matter to me. Life is short so we should make the most of it.

Natt will be moving on soon, I won't divulge the details as its not my place to disclose someone's personal details without consent. People are entitled to privacy. I won't lie, it'll be nice to have my living room back and when we finish doing it up, it'll be lovely. That doesn't mean that I won't miss having him around. The thing with a close friendship like that is that no matter what, there's always someone to have your back and you have theirs. It was good to help out a friend during their time of need. I didn't do it for anything else, just that he needed a place and I had room. To be honest, last year was a trying one for us both, we both had major health blows and we supported each other. And even when he's not living here, we won't be strangers. After everything, I don't think we ever could be. We are all like siblings here and we look out for each other. We have been friends for nearly a decade after all.

I don't think I could be without all my friends and family, including the furry critters. Its hard to imagine but my little Tenzou is 3 years old now. I remember when I first got him and his brother, how tiny they start out. I remember a time when I could hold Bumble in my hand and his ears were huge compared to the rest of him. Its weird to see my little fluffy boy become the cute, crazy little thing he's become. They're all special and they all have their own funny little characters. This is why I love them. The bunnies too. Ginger and Loki have grown up well from those tiny little kittens, and they really were tiny. Don't think my house would be a home without them.

I'm just hoping to get better over the next few days. My lungs have been full of muck again and I've still got the strange spots all over my neck, chest and back. We don't know what it is but it seems that whatever it is, its possibly reached a systemic level which could be dangerous so it may result in a trip to the horrible place but I don't want to say too much. If it happens it happens.

Loves
Wendy xx