For life's little ups and downs.

A rather quirky, funny and sometimes daunting look in to the life of someone who has a lot of health problems but does their best to keep positive.

I started this blog to tell my story, about who I am and what I do. I live with 2 mental health problems as well as a disabling and sometimes painful physical problem. This is me. This is my life. I live it and do what I want with it. Nature sets the limitations. We set the boundaries.

About Me:

I am young, caring and a very smiley. I have a lot of wonderful people in my life and these keep me going through the best and worst of times. I live with Bi-Polar Disorder, Obsessive Compulsive Disorder as well as Type 1 Brittle Asthma, Various Allergies, Neutropenia, Chronic IBS, Osteo and Rheumatoid Arthritis, PCOS and Osteoporosis. I live with these conditions, but I refuse to let them keep me down and out. I still try and make the most of my days despite being so poorly and having to rely on my wheelchair, nebulisers, nearly 50 pills a day and 2l/min of oxygen.

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

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

Tuesday, 18 November 2014


Well, today is my 27th birthday. We were told that I would be lucky if I got to 25, so being still here today is either a testament to my stubborn nature, my refusal to quit (although there have been times when I got close, and I mean REALLY close, measuring up an overdose of my meds and seeing what would be quickest, but I'm putting that behind me now) and my spirited nature. I think I have dealt with things that most people would look at and think "Screw this, it's not worth it anymore" and I am still here. I think that is something to be proud of.

I'm a survivor. Not a victim. I have no reason to be ashamed of myself or the life I lead, actually, I think that I am holding up well considering the circumstances and the things I have to deal with. Luckily I have been given a package of care from the social services because on my own, I know I would never be able to manage to take care of myself. This was something I worked out some time ago. It isn't a nice thing to be dependent on others to help and I do try and do as much as my conditions allow. I don't ever want to be a burden on my friends and family, I know they wouldn't refuse to help but that's not really the point, so getting help from a care agency has been a wise choice.

The carers come in 4 times a day to make sure I am alright, get me a meal when I'm hungry as well as helping me with personal care. Because of my arthritis I struggle to get in and out of the bath (well going in is easier than getting out) as well as getting breathless when I do things. The social worker was looking to reassess my case and see whether the care was appropriate and whether or not I would benefit from a "Promoting Independence" worker instead. Unfortunately, it was very clear to even the most scrimping social worker, that removing my care would be completely detrimental to me.

The problem is, my illnesses aren't a temporary state. The damage done to my body is permanent and it means that only less then 1/2 of my lungs work anymore. This means that my tolerance to certain things is dramatically lowered and I am becoming more and more reliant upon the equipment around the house to keep me going. Its not an ideal way of life but I am at least making the best of it. I don't see it as a reason to feel imprisoned in my home or in the hospital. There was a time when I never went out unless it was to a waiting ambulance and a "night out" involved being used as a test subject and this was at it's worst (before I had a home nebuliser, which would have made taking it away again even more insane) about 2-3 times a week. Hardly what one would expect for someone my age really.

Today has been one of the best birthdays I have ever had. I breezed through the social worker appointment and the council guy coming to check the mould (weird, it's not actually a damp problem or a condensation thing, they said it was probably just the lack of air flow because under my bed was full of boxes which are now in the cupboard) and he checked the walls (turns out my love of open windows and not sealing my home is actually a good, healthy habit) and everything is fine, I can continue to enjoy the home I have here and the level of care I have been getting.

Last week, the social worker did kind of light a fire under our backsides and said that she felt I was "too young to receive care" so when she came in today, she saw what my life is like first-hand. Illness doesn't just choose older people. The problem is that as we have an ageing population who need more and more support, the majority of clients on care agencies books are elderly people and the ones who can't get help or the families are sick of (which I really find deplorable) are stuck in hospital where they are prone to getting super-bugs and other hospital acquired infections (all because the families are too selfish to care for them) and this puts extra strain on the already stretched medical services. I have heard stories of people dumping their elderly relatives at A+E with their suitcase and refusing to take them home again, meaning medically fit, elderly patients are left in an environment which is totally inappropriate. Yes, there are genuinely very poorly older people and they deserve the same care that any other patient gets. But the people who deliberately injure or make themselves sick to either be admitted (or, as I have witness, made themselves worse to stay in) to hospital is shocking.

Usually, as I have been told, it is an attention thing. When someone is in hospital, they are being taken care of around the clock, they have food and drink brought to them. They're washed, dressed and generally waited on hand and foot which puts so much pressure on the nursing staff. These nurses are already pushed to the edge by the amount of people they get, not to mention more demanding patients who want constant attention and care. Whenever I think about this, I think about a patient who I am just going to refer to as "J".

I was on a ward with this woman for nearly a week and the way she behaved was utterly foul. You see, she wanted to be hooked up to drips, oxygen and machines. The nurses would be in constantly to her because she was so demanding. Drugs rounds took over 2 hours sometimes because of her, either her "crying" for attention, holding her breath to make herself look more sick and pretending that she was dying (despite the fact that the doctors couldn't find ANYTHING wrong with her) so that her family would refuse to take her home. When nurses went to her, she would scream at them, hit them, spit her tablets out at them and would decide at 2AM after not eating all day that she wanted her insulin and she wanted it NOW. If someone else was being cared for, she would scream and make a fuss, the bedtime drugs would finally get finished at around half 11 at night when she had finished, the nurses would try and reason with her that they had other patients to care for but she would go even louder. She had been banned from all the other local hospitals for her behaviour. Her husband was more worried about losing the DLA and Motability car if she died (which honestly she was in NO danger of, even in breath holding, her sats stayed normal which pissed her off even more, when they took the oxygen off (she was only on 0.5l) she had a right hissy-fit) and the family wouldn't take her home because when they visited she would pretend to be unconscious (the doctor explained over and over that she was just attention seeking and I felt for him because he bore the brunt of the relatives, eventually the guy snapped and dragged them all in to the office to tell them that she was faking it!), peeking out from under her eyelids every so often to see if they were still there...

Unfortunately, as the nurses said, the respiratory ward gets a lot of these patients because there isn't any care in the community for them. The families refuse to look after them and toss them away because they're too much hassle so they get dumped there. People should realise that a hospital isn't a "free care home" and as we have an acute hospital, I do think that people who don't need to be there should be in more appropriate places. They should increase the social care budget, because they don't get enough to deal with the workloads they have and unfortunately some people do slip through because they don't fit the criteria in some way. I suppose I was lucky to be found to meet the criteria to be awarded funding for care but I do feel so sorry for the poor old dears who are just left in a situation that isn't right for them, including people who refuse to let their elderly relatives go in to residential care because it effects their inheritance (seriously, how disgusting is that?!) or refuse to take care of those vulnerable people because they're too much hassle. These people are still people and they shouldn't feel like being stuck in hospital is the only way of maintaining a decent quality of life. That's just my thoughts though. 

Wendy xx

Thursday, 30 October 2014

A Positive Thing

I was wondering recently, someone asked me what at typical day in the life of me consisted of and I never really got around to saying exactly what that was like. My days vary obviously from what my peak flow/ SPo2 and every other thing says so it can be a real mixture of things. I don't think there is what we would call a "typical" day with a variable condition. Today is one of my days where I have been trying to keep myself occupied as last night we had to get the emergency GP out (it was that or they would have had me taken in, which would have been needed had it not been for my o2 and nebulisers on hand) and I had a call off my GP this morning to discuss matters. The problem with my health is that it doesn't actually behave in a "typical" way. My case isn't textbook and it has more complications than most.

10:30 my day started as it does most days with my first carer. I have been getting regular carers and it is starting to form a pattern as to who I have. I get on with my carers and I like to feel like they have become a part of my life, not just "hired help". In the morning, we have to check my peak flow (either with a peak flow meter or my electronic Piko-1 device) as this can be an indicator as to how my asthma is. A "normal" measurement for me would be around 400l/min (optimum would be 440l/min respectively, but that would generally be if I wasn't asthmatic), this morning it was a little rubbish at 210l/min and my oxygen saturation (SPo2) was about 90-92% when I took my oxygen off (I have been sleeping with it recently as my chest has been absolute hell and well, I struggle like anything without it) and when I put it back on, we got up to 96-97% which would be considered "normal" for me. I stayed in my PJs today because I have been told to rest until I feel better.

The problem I have is that I find it hard to keep myself amused when I have to stay in one place. Because of my intelligence, I find I get bored really easily and when that happens, I tend to become destructive or depression kicks in. Luckily a new "Professor Layton" game arrived, I have all but one of the Layton series and I really do enjoy the test of them. Solving the mysteries and working my way through the puzzles is a great boredom breaker. When he teamed up with Phoenix Wright (another game series that I really like) and that can stop me from going mad and getting in a tizzy. I have also been playing other games on my DS and watching The Simpsons on my laptop.

I had a phone call from the doctor today too, just to talk about how things have been over the last few days. I was asked about last night and how I was feeling. We then discussed my "preventer" medication. I had been on the Symbicort 200/6 SMART dosing (2 puffs twice a day + 1 puff PRN) for years now. I used to have Seretide 500/50 but after a while found that didn't really do a lot for me and I was switched over to Symbicort back in 2010. It has helped me and I did find it more effective than Seretide so I was happy to take it. I am now on the 400/12 dose 2 puffs twice a day. It is early days yet so it is hard to say if it is working (I also have 40mg pred in my system as well which is probably sending me loopy too) but all I can do is be optimistic. I have to believe that it'll work. Every small win is a victory and any small improvement to my quality of life is worth a go. My quality of life isn't at the "Oh my god, woe is me, my life is awful" stage that so many others would be if they were in my position. I have to think pragmatically and I have to be objective about everything. Keep a positive outlook, even if there are days where I feel like I want to quit.

You have to be positive. You can't let these things get to you or they will destroy you. Even on days where I am thinking "Seriously?!" I try and make the best of it and look at things in a better way. I suppose that my condition has allowed me a certain freedom and I have the security to live comfortably and do everything I want/need to do. I have my home, I have my friends and family and I have the pets I adore as well. I can't help but feel like I am at least lucky in that way. I do wish I could go out and have a job, my social life as I used to and do other things but I can't focus on what I've lost. I have to keep looking forward and keep moving.

We are only defeated if we allow ourselves to be.

Wendy xx

Wednesday, 15 October 2014

Not Alone.

I am still here!! I just haven't had much of interest to blog about recently because really nothing new has been happening. I get these phases where it kind of plateaus and nothing remarkable happens. As frustrating as that can be sometimes. Since Wednesday, I have been having carers again. I had them before but they were stopped because the social couldn't get the funding for everyone. Now my needs have dramatically changed in less than 18 months, I am entitled to them again. I guess my health taking a nosedive has had it's advantages in a way. Like a lot of people, I was entitled to more help than I was getting at first.

So, since getting carers in, it's been nice. I have help to get up and out of nightwear, have a proper breakfast (not misc junk food or last night's left-overs) and I get ready to do whatever it is I have planned for the day. It does add structure to my days and that is ultimately good for me because it will help me settle down a bit more. It's good to see it in place before Natt moves out so that I can continue to live independently and he will still come over some days to check I'm doing OK. I think it's taking a lot of the pressure off his shoulders, it can be hard to care for someone, especially someone you're so close to. I know it has been hard on him to watch me get worse over the last 6 months and I often worry that he blames himself in some way. It wasn't his fault and I will keep telling him that.

It's been hard for me to get better recently because of my nightmare neighbour upstairs and his constant being a pain in the backside. I mean, who does DIY at 4 in the morning?! It's like he never sleeps either because he'll make noises at random throughout the day and night. Admittedly, I did find it funny when he tried to do something to the girls outside and he got a furious Riza attacking him. The squeal was worth it! I did then think "that'll teach him" and it did. He never came in to the garden again. Even though the girls are back inside (in the bedroom with me) for the winter now, as was always the intention, much to boy bunny's distraction because he can smell the females and he has this whole natural instinct to reproduce like all animals really. As lovely as kittens would be again, I don't think it would be in anyone's interests. It was wonderful though that 6 lives began right here in my flat and Riza was such a good mother and she did a great job in raising her little ones. I can't believe it's been a year and they have grown up so quick.

My animals mean as much to me as friends and family. Anyone who can say "it's ONLY an animal..." honestly has never been blessed with the utter pleasure of raising and being loved and trusted by a companion animal. There really is something magical about when you earn a pet's absolute trust and their undying love and affection. I have spent years living particularly with small animals, such as rats, guinea pigs, rabbits and all different kinds of hamsters. I don't ever regret it. In fact, my life has been richer in knowing the pets I loved (and they are never too far from my thoughts even when they're gone) and I believe that it has been my animals, as well as my friends and family, which have given me the strength and courage to keep fighting, even when things looked impossible or the pain was too much.

A lot of people say "oh but it's ONLY asthma" and tell me about how so-and-so has asthma and they are working and living a normal life so why can't I? I know when people say things like that, they're only trying to "help" and empower me somehow, but seriously, it really has the opposite effect. Telling someone about how their condition shouldn't affect them is a really horrid thing to do. Unless you can 100% know their life, what they have to deal with and how they cope, you honestly can't say what they should or shouldn't be able to do and frankly, I get tired of it because it makes me feel worse because I know I struggle. I know things can be tough and I know how and why. I'm the one who can't really do much. It's me who has to take as many as 50 pills a day and I am the one who deals with this as a constant throughout my life. I don't need reminding of it as if I don't already see it. I know my situation. I know what it feels like. I know what I can and can't do and I know my limitations and not to take foolish risks with that.

I have always believed that you can't judge someone until you walk a mile (or try to) in their shoes.

I have always been upfront about my physical and mental health because I truly believe that they are not things to be ashamed of. There are a lot of people who would try and almost blackmail me with my mental health but it never works because I don't have to be afraid of what my life can be. Just because I have these problems (bi-polar, OCD, BPD, schizophrenia, Aspergers (even if it's only borderline)), doesn't make me any less of a person. It doesn't make me "backward" or "wrong", it just means that I have to work harder to understand the world around me and I appreciate it more that way. I hate how there is this stigma with mental health problems and even though people are trying to break that, there will always be people out there to put you down and make you feel bad because of something and anything they can use and make nasty comments about shows how immature and backwards they really are.

I have a cousin, hes autistic as well and I am so proud of every milestone he makes. His mum and dad do everything they can so that he can be every bit as awesome as he is. I haven't seen him since he was 4, but I want to catch up with the whole family soon. I want Daniel to know he isn't always going to be alone and I want him to grow up without fear and with the support we never really knew that I needed until I was too old.

I have always tried to overcome the barriers that my health poses, even if it was a losing battle, what mattered most is that I at least tried to do it. There were things I never managed to finish (like my HND, I had to drop out towards the end because I was in hospital 3/4 days a week and exhausted and trying to recover the best I could at the time) but there are things that being supported has done for me. Getting the right equipment and support now has meant that I can do things I never even thought possible anymore. From going on trains to see people to actually going out and socialising with friends. Yes, it takes a lot of planning, preparation and I am absolutely shattered by the time it's over but I feel good. I feel happy.

I'll never know exactly "how long I have" but to be honest, I don't want to know. I want to carry on living my life the way I want to. I want to make sure that when my time does come, I can honestly look back at my life and say "Yeah... I did a pretty awesome job there."

Wendy xx

Monday, 22 September 2014


OK so I have been doing some new stuff recently. Stuff I can enjoy and honestly say has been rewarding. I have always had an interest in 3D animation, always wanted to learn how to do it myself. So I asked Natt to teach me, after countless hours of experimenting (and some of the funniest expressions ever) I seem to be getting the hang of it. I am by no means an expert but I am learning by doing and the results are something I am proud of. Sometimes a new thing to learn can help and build you up from a confidence angle. I think it helps both of us, gives me a new thing to learn and Natt someone to teach and help.

It's taken me this long but I have resolved myself in to thinking "Yeah, OK, I may not have forever here, so let's fill the time with good stuff." and I have been spending so much time with people I love and enjoy being around. We have started to do more social things as a group and we have a great time in doing so. Yesterday was nice because we had a group meal at a place in town. There is something quite nice about having a decent meal with friends, even if they seem to eat about 4 times what you eat! Mike and I were talking Pokemon (next time we meet, we're both going to have our 3DS's at the ready with our Pokemon games so we can trade) and he's seen the ones I have as well as getting my Pikachu to eat the sweets we offered it.

I've had my 3DS for about 2 weeks now. I wanted one since playing on Mario with Jace at Christmas but one thing I had to remember was paying back the loan a friend gave me to set up my home. Since paying her back, I have had more to play around with and I finally took the plunge and treated myself to a red 3DSXL (I have the XL versions because they're much easier to see and you can play them with someone easier, Jace and I like Phoenix Wright games so its more fun to share) and found my DSi a new home. I don't miss "Old Blue" as much as I thought I would. Currently I have been playing Theatrhythm, a Final Fantasy music game, and despite my initial reservations, I have found it really fun to play. I also upgraded the HDD in my PS3 as well (my original one was only 12GB, I mean seriously?! Who could even play with that little memory?!) which was actually much easier than I thought it would be (simply slide off the cover, slip it in to the slot and turn the console on and you're ready to go). Yeah, I am a tech-head!

Last week, I also saw my mum, and met her new boyfriend, which was really awesome. It's been great being back in touch with my mum again. Being ill, there have been times when I have really wanted her to come and be there with me, which is normal when you're feeling vulnerable or scared.  I've had some scary things happen in the last few months alone and it kind of got me thinking about life in general. Making up with my mum has been way past due because, despite our differences, you only get one mum and its in going through things alone that you realise just how much you still need her, even if you are all grown up. I think it takes a lot of courage to rebuild those kind of bridges and theres a lot that has to be said to heal the relationship. I'm glad that we got that chance. I don't feel so alone anymore and I feel happier as a result.

I think that lately, I have been filling my life with the things that make me happy, cutting out the things that made me feel bad or miserable because I figured out that people can only make you miserable when you let them. I let people push me down and make me believe that I was this horrible person who deserved what they got for so long so I am changing that. I know I didn't do anything wrong and that I didn't deserve any of this, I just have to smile and make the most of it and enjoy life while I can.

Wendy xx

Tuesday, 26 August 2014


The more I look in to bronchiectasis, the more it bothers me that it was never picked up on before, especially when you consider that there were so many opportunities to catch it. It wasn't as though I never ever went to the doctor or hospital and had never had any scans or tests or anything or the "classic" symptoms of the condition, things like constant chest infections, worsening shortness of breath, not to mention the knock on effect it has on my asthma. All I knew was there was this mysterious "shadow" on my X-Rays which no one seemed to be able to explain what it was and why it was there, in fact the common thing after they saw it was on every X-Ray since last November is to try ignore that it's even there! The most common explanation was that it was part of the scarring to my airways after years of chronic severe asthma and more chest infections than I dare to count.

I had a CT scan in March during a particularly long and difficult admission where I was in for nearly 2 weeks. It followed a life threatening asthma attack, OK so I didn't do myself any favours by trying to ignore it for days because I didn't want to go to the Alex (who does?!) and the doctors were wondering why I was only getting so much better at any one time and then declining so fast again. By this point, I had been admitted to hospital about 4 times in the preceding 6 months. We were told that the consultant radiologist who reviewed my CT scan had reported that apart from scarred areas which are typical of my condition, my CT didn't really show anything out of the ordinary. When I was finally told that the scarring was very pronounced and there had been airway damage in June, I was daunted but the promise that if/when these lungs are done, they would get me on the transplant list but until then, it could be 5-7 years and I should make the most of it. I was started on home oxygen and to be honest, since being on that, my quality of life has improved. Since being on it, there has been a huge turnaround in my life. I have a better outlook. I go out and enjoy myself. Heck, I even take pride in my appearance and enjoy making sure that I look as pretty as possible before going out.

So being told that on top of everything else (the asthma, the scarring and all the other conditions I have) that I had actually developed bronchiectasis as shown in my CT scan (yeah, the one in March that a consultant radiologist confirmed, during a case with another doctor, didn't show anything inconsistent with asthma). So I could have been had this condition and it being left untreated for 5 months and we didn't know. It bothers me because had this been picked up in March, we probably could have avoided the subsequent attacks and hospital admissions, we could have gotten on top of it BEFORE I needed home oxygen and the life threatening attack I had last week could possibly have been avoided.

I want answers.

I want to know why it was never picked up on before.

I want to know why medical staff involved with my care had actually lied in my records.

I also want to know why parts of my medical records have "disappeared", especially ones where clear indications were shown of my state of health and quality of life which would have been detrimental to the medical team involved and forgeries and falsified ones took their place.

I want to know why this seems to have become a common practice (I spoke to a few people who have had the same things happen. Volumes of medical records "going missing" and their existence being completely denied) and lastly, why is it even allowed to happen? Our medical records are supposed to be accurate and credible and show an objective portrait of a person's past and present health to allow a prediction of future health. These notes, whether they're on computers or paper, should follow a patient from the cradle to the grave and they shouldn't be forged or changed just because one doctor doesn't like what he sees or if a complaint is brought against them, could be detrimental to their career. After all, it is them who make the decisions in to how any health problems are managed, so I wonder, if I can't trust the doctors to make credible and accurate notes on my health and those notes not be corrupted, then in all respect, who can I trust? As I say, I want answers and there is no way in hell I am backing down until I get the, and the wrong things put right.

But enough about all of that, on a bit of a nicer note (music pun coming up) I have been learning some more songs on guitar. I love playing but haven't for some time because playing does take a lot of energy, so I play in short amounts and if I have to, I boost myself, especially if I'm playing and singing at the same time. The song I learned this weekend was one by a man called Voltaire called "USS Make Shit Up" which is about Star Trek and how they seem to make it up as they go along. I have watched a fair amount of episodes and it does seem a bit of a "Well this works here, but suddenly it won't anymore" which is quite entertaining, but it started in the 60's and the fact it's still going is something cool I think. I don't really like it as much as other things but I can respect it's longevity. The funny thing is that Voltaire is a huge fan of Star Trek and his observations on the series are both funny and affectionate. The music is fairly simple but there's something satisfying about learning a new piece, even if it is just a few chords. I wouldn't fool myself by saying that I am the best guitarist in the world, but I enjoy what I do.

I do wish I could play the flute again though. When I was younger, I took so much pleasure in playing the flute and my certificates for grades 1 and 2 are still on display in my bedroom because I was so proud of myself for getting them and achieving something. It may not be the most amazing thing to get, but having something to look back on and say "Yeah, I did that." is really a morale boost. Especially when I feel a bit rotten. That and some of the other things I enjoy like retro cartoons or listening to cheesy J-pop. Right now the song "Pon Pon Pon" keeps getting itself stuck in my head. The song basically translates to letting your crazy side out and do whatever makes you happy. The funny thing is when I was singing along to it in hospital, the nurses were wondering what I was on! It's one of those songs that you can't help but smile when it's on. 

Ah well, I guess I am just going to have to see how things go.

Wendy xx

Thursday, 21 August 2014


I have had some really surreal experiences in my life. Some were more self inflicted where as others have come about due to being in hospital with a lot of older ladies. The problem with it is that a lot of these older ladies are confused through no fault and they can't understand that there is other things around them and sometimes you do get attention seekers (there is always one wherever I end up, they wait for the nurses to come in and suddenly they start screaming and shouting like they're near murder!) and it says a lot when the all the nursing staff comes in at 4 in the morning because she started making such a noise that she woke the entire ward up just to tell her to shut up and stop being a pain. She wants to be centre of attention and basically if she doesn't get it, she rips drips out and causes problems and actually worsened her own condition just so she could stay there longer.

Basically the consultant has ignored everything that is contrary to his thoughts on my asthma, the most annoying was the clear desaturation I had when on air and the oxygen being reinstated by the nurse (saying I reinstated it when I didn't, I am not that stupid to turn the oxygen back on when it was switched off at the wall, that's for the nurses to do) I actually resisted when the nurse tried hooking me up to the nasals). I think it wasn't the content of the lie (it could have said "Has been growing a set of antlers" or some other rubbish and it would have aggravated me) but the whole practice that seems to have come about where lying to cover their tracks is the order of the day. I have taken photos of my records and I have that ready for when the time comes. It was funny when the respiratory nurse and some of the other doctors read my letter and said that it was all a pile of rubbish as the nursing notes clearly said the opposite. Heck the results of the previous breathing tests he was looking back at were in 2005! That's nearly 10 years ago and I was in a completely different place with it, I hadn't had any life threatening attacks or pneumonias.

Shes come up with a plan to do another full oxygen assessment with me, to prove her point that I should be on a little more and to give that one doctor the ultimate in "so there" as well as the other doctors who agreed that there is a COPD element to my asthma, probably due to repeated infection and these being poorly managed, and my asthma is anything but mild and manageable. Well, it'll all come out in the end, as for now, I will save on my indignation until the time comes when I can vent it properly and have something done about it because when it comes down to it, I am the one who has to live with it for the rest of my life. As for my supposed "not engaging" with their plans, I did engage, heck I made myself worse by doing so! I tried the new inhalers and had no benefit and I tried the new plans, heck I even allowed them to cut my antihistamines to just one (and now have the drippest eyes and nose I have had in a while). Luckily I have others on my side on this so I don't have to accept it. I asked for a second opinion. I got it. I then asked for another doctor as a tiebreaker. I dread to think what this more "detailed" letter is going to contain but I have my ammo ready just in case. The funniest thing was when the other doctor looked through my notes and then my discharge letter, saying it looked like it was from 2 completely different patients!

I think I am just happy to be home right now. Back in my own bed with familiar surroundings and away from being kept up all night by noisy patients (I can't get over the one patient, she was really funny, she pointed to the attention seeker and said "I can't deal with this irritation" which set me giggling and then the whole shout of "I have a itch up my bum!"and then her thinking I was the nurse, thats when it got weird! I won't go in to the scarring details but it would have been funny if it hadn't really happened.) The only thing I have to worry about is that I am now in the recovery stage of the attack, it takes time for me to get my energy and strength back after attacks. I don't leave the hospital well. I just leave less sick.

Having my meds bounced around so much just days after a serious attack is one thing, the fact that the attack was completely ignored by the consultant at the time. It says something when you check your peak flow (which they weren't monitoring on the ward, what the hell?!) and it's only just higher than what it was when you were first admitted and they had been considering ITU. Kind of raises some serious questions doesn't it? I am glad I got another opinion before I left, on top of the previous opinions of Dr Lal and Dr Brocklebank (they confirmed the bronchiectasis and the other doctor, who I have seen in clinic was the deal breaker) otherwise I would have been left up the creek with a mouth like sandpaper (common thing with Spiriva) and barely able to move at all without cranking my oxygen up. And this is what they thought was best for me?! I am going to get a call from the GP tomorrow and get their view as well as re-referred to the SBAU. As for now, I am re-adapting to Atrovent, I think I took for granted how much that stuff has helped me over the years and I will never be unfaithful to ipratropium again!!

I guess I have to think positive about things, they know a bit more as to why I have been so crappy and we finally know what those shadows on my X-Rays were.

Wendy xx

Wednesday, 20 August 2014

Going Home

I think one thing that has come from this admission is we know for sure that I do have bronchiectasis and scarring of the airways. This was apparently discovered after my chest CT in March, (yeah, the one that the other team dismissed as "normal" and now it magically shows something...smell that? I smell bullshit from somewhere and I am going to find out who it was and in short, their ass is mine.) and I am already on what would be the best treatments and care needed.

The problem I seem to run in to with the consultant comes from the fact that he has never seen me in the throes of an asthma attack because by the time he can come to see me and review me, I am over the attack and am in that kind of shaky post attack stage where I am either very sleepy or I have started to bounce back. He didn't look much in to my history and was pretty sure that my asthma is very much the same as what I had 10 years ago (I wish!) and he didn't notice the A+E notes, the previous admissions or anything else. I do think that they had the 1st volume of my medical notes which hasn't helped but that then makes me wonder, where my other volumes are. In some ways it's like turning up at the cinema during the last 20 minutes of the film and only getting a small part of what happened. So all he sees is the kind of post attack which makes it hard to determine what my asthma is like day to day. He doesn't see (or have all the same evidence that everyone else has, as I said, a lot happens in 10 years) that I get so breathless day to day so I am glad I'm under a team instead of one doctor.

When the attacks are over, I can have (with assistance) a pretty alright quality of life. I'm not running marathons or partying all night, but I get by. Luckily for me, the other consultant, Dr Lal has seen me during an acute attack, as has Dr Brocklebank (who once attended me in resus and was finally turned around on all of this). The problem a lot of consultants, like my Dr Vathernan, have these days is that because they have so many patients to see, (he didn't remember seeing me in March, but he was there!) and they only see what they see when they see it, it's hard to decide how severe something is off a small chunk of the bigger picture. Sometimes, because I am a really complicated case, it can be hard to take in the whole portrait instead of tiny postage stamp sized portion of the picture. The other thing he seemed so focused on was just how much medication I am on and all he seemed to want to do was reduce and stop things. Luckily he saw the light with the nebulisers and listened when he was told that they work for me, he really wanted me off home nebs but I think after a good long chat, we decided to keep them but I would be best going back to SBAU.

I'm kind of on the last few desperate attempts to regain control. We tried taking me off some meds, which unfortunately didn't go so well. Again, (like a thing we did in SBAU where I was taken off EVERYTHING, stripped down and started again) which I could have told them would happen but I think sometimes they have to see it for themselves. We're trying a new medication called Spiriva. I have never had it before so I am willing to try anything. We did try going back to Seretide for my asthma but honestly, all that achieved was I had a small attack before bed last night which meant that I didn't get a whole lot of sleep really, took us ages to calm it down and by the time we did manage, I was too exhausted to care.  My oxygen has been increased to 1-2l at rest (if we can get it to just 1l at night so that I stay comfortable and breathing easier) and I am going to be assessed by the respiratory nurse to get a special concentrator machine at home, along with my current 6 cans. It was decided earlier that this would be needed but the consultant had a hissy fit because he didn't want to accept that my asthma is brittle, but as the nurse said, it is sometimes a case of his ego gets in the way and being proven wrong annoys him, not to mention his idea that nothing has changed over the last 10 years.

I do have my diagnosis from an asthma specialist. I went through the process of diagnosis years ago and we started from scratch at the SBAU in Birmingham. The one thing I am really struggling to come to terms with is the fact that I have had 2 conflicting diagnosis' on the COPD matter. One person says one thing, another says the opposite. Who do you believe?! Dr Lal, who everyone sings his praises and rightly so because I have been seen by him a few times and he has exacted a lot of positive change in my life, or Dr Vathenan, who everyone is saying has a nasty habit of not listening to people and has in recent years started to become a bit past it. I'll entertain the Spiriva but I really am not seeing much improvement from it and all it has done is dry my mouth and that's it. But I said I would give it a week and I will do just that. I was told by the junior, who was wonderful and listened to me when I got upset about the pain, he said if I didn't feel any better after a week, call the GP and get back on Atrovent. It's all a little confusing to be honest and I was proud that I managed to keep on top of my asthma for 12 weeks (sometimes by the hard way but we got there) and the Jr doctor who has been helping me has agreed that chances are this was a blip on the road and a radical shuffle of my meds has probably caused more harm (or at least more frustration) than good really. Kind of what I said from the start (but what I do I know eh? I only live with these issues day by day, I wonder if doing an "I told you so" dance would be in bad taste?).

I am set to work with respiratory nurses to try and make the best of things but the final say so will come from the consultants. With 2 out of 3 of them on board, I can't see myself running in to any issues and the respiratory nurse agrees with me in that one. I think the main problem is that we can't definitely diagnose asthma or it's severity. Some patients could present one day very well and then at death's door later on. I think I am happy that I am going home tomorrow, the old dear across the way is driving all of us potty because she constantly moans and screams out "Please help me!" and loads of other misc moans can complaints and groans. I know she can't help it, but when you're trying your hardest to sleep at 2AM, you really don't want to have to listen to it, especially when they do what they can for her and all she does is attack them in return.

I was talking to the student nurse today and she told me how the family just dumped her here and refuse to take her away until she goes in to a home. I think when families do things like that it's horrible. It's like they no longer continue to be human beings and are just a nuisance to be "thrown away" just because the family can't be bothered anymore. The unfortunate thing is that they get left on hospital wards where they could pick up infection from anyone/anything and they increase the demand on the nurses as they have to spend more time tending to them as they can be very demanding, again it's not their fault, combative and no matter how hard they try, they can't seem to keep track on all of them, especially the wanderers. The other people this has a knock on effect on is the other patients in the bay. Because of 1 or 2 demanding patients who want to be nursed 1-1 all the time, regardless of whether they need it or not, not to mention the paperwork, the other patients don't get the level of care they need, and if they're a screamer, they sometimes end up keeping the other patients up all night as they don't know they're doing something they shouldn't. I've been cooped up with 3 screamers for the last few days.

One is just confused and sometimes asks us random questions, she's harmless really and every so often you just have to talk to her and it can be quite fun because she likes to talk about her children. We have one who randomly wakes up and asks for help to get out of bed, back in to bed but the nurses are being a bit tough and trying to motivate her to move herself. Again, once shes settled, shes no problem. It's the third one that makes the rest of us on edge (even the two ladies) because any time in the day or night she starts shouting, moaning and crying out, the nurses deal with her but never find any problems. She needs to be in a proper care home, where she can get the 1-1 care she needs, not being left in a hospital where she is obviously in a lot of distress, is scared and is making the others nervous and scared, I feel for her, I really does because all they seem to do is give her meds to help her go to the loo but shes obviously in a lot of pain and is very scared. I really hope they help her to safety and she manages to find a peaceful place to rest.

As for me, I am planning on discharge today (YAY!!) and I will probably call up and get advice regarding Spiriva as I am skeptical, I have needed my inhaler more today, we'll try anyway. We don't know what we can achieve until we try do we? But I can can say that Seretide and I won't be mixing again, just doesn't help me and well, I was kind of annoyed that they made me open a new inhaler to have 1 puff and it do that to me. I took it and this sudden  pain and tightness hit me, before I knew where I was, I was really struggling and needed a lot of nebs to get settled down, so I am back on my Symbicort, so really not a lot has changed but at least we know that I have developed something as well as my asthma so there is more of a reason for my issues now with the bronchietatsis and airway scarring which is unfortunately a forever deal so I have to just do what I can and see where we end up. I can't wait to get home, the care here was great but I am not going to miss the patient going berserk at 4am!

Wendy xx


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