Fighting for Breath

I Have Brittle Asthma. Everyday can be a battle to breath and survive. This is a space to share, rant and come to terms with my everyday challenges and thoughts.

10 Reasons I Hate Asthma

I don’t know really what to blog about, as nothing is worth a post so time for a stock general post. I would like to remind you all I am confirmed Brittle Asthmatic Type 2, with at the moment uncontrolled day to day. This isn’t normal asthma, it is a sub-type that is not fully understood and management can be difficult and what works for most asthmatics might not with me.

1.Hospital Admissions and Appointments

I am in hospital frequently, in the last 3 years haven’t gone longer than 6 weeks without being admitted. Being the type of asthmatic I am. Most of the time involved blue lights and sudden attacks, with no warning. I go from being normal for me to being unable to say more than a whisper. I am the kind of person that is unstable this means ITU/HDU admissions invasive measures and lots of IV medications to get me able to go home. I am usually in for at least 48 hours. Admissions leave you physically and mentally exhushed.

I am also under 2 Respiratory consultants with appointments regularly, asthma nurse appointments, pysch appointments and not to mention GP and tests I have. I say every month I am at the hospital for some appointment.

2. Using medications or becoming unwell in public

I hate people staring, even when just sitting on a bench catching my breath (usually I’m dripping in sweat!). I think its what do people think of me. I know allot is human nature. I just hate it!

3.Limitations

I haven’t been asthmatic all my life, I still remember what I used to be like. So my mind hasn’t caught up to what my body is capable of. I want to do soo much more with my days and some days it takes 10minutes to go to bed at night. Not to mention days when I just cant stay awake.

4.Being Heard

Brittle asthma is such a individual thing and knowledge and understanding in management in a emergency is limited. I refuse to let my asthma control where I go so I do travel when I want to and where I live you go 15 minutes any direction your in another hospital zone so I have been seen by other hospitals they don’t know me and how I respond and this has slowed recovery and put me at risk. When having an attack I struggle to get my message across due to being unable to communicate or some Dr thinking he knows best. there has been times when I have gone down hill where it could of been avoided if I got the medication I know that works early enough.

5. Pre-planning

I like just deciding to do something and going off and doing it for example I used to be able to decide to visit a friend and just go, now I have to make sure I have enough medications and if going away over night working out how much I need planning in case I get captured. I cant just go out now with keys.

6. Drugs

I hate having to go to the pharmacy, I feel like some druggy there is people 3 times my age on less than me. They all know me by name. All the medications I take now are for either my asthma directly or for the side effects of the drugs used. I have about 20 items at the moment though hoping to start cutting down on them. I don’t like the side effects, mainly of steroids every time I am ill they get upped and takes ages to get back down by that time I am getting close to an admission so don’t spend long on low doses, I puff up and get full of fluid not to mention eating house and home. I dread to think about years to come due to steroid damage.

7. Sleepless Nights

I don’t sleep well, I wake up frequently tight chested, I am forced to take medication in order to get back to sleep but only lasts a few hours and I’m awake again. I usually don’t start to go into restful sleep until around 7am (hence why I always lie in). I am usually unwell the latter part of the evening so if I end up in hospital I am unable to sleep all that night and then in the day have the usual rounds of Drs and nurses doing bits!

8. Work

I have lost my job due to my asthma, I am limited in what work and where I work because of it. I still have dreams to become a Paramedic but I know that I cant, at the moment I don’t even think I can be a nurse. Not through lack of ability but due to the risk of me getting ill on a patient, cant really be in the middle of a resus case and say just wait there whilst I have a neb!

9. Perceptions

Most people see asthma as a children’s disease or just a blue inhaler, even my own family didn’t know the full implications that asthma could have until you have been through it. Even asthmatics themselves don’t know how bad it can be until you’ve been in and bad is in the eyes of the beholder. Even Drs themselves sometimes struggle to understand the effect can have on day to day living.

10. Unpredicablility

I don’t know when I will be in hospital next, I don’t know if my asthma will stop affecting me, I don’t know what I will be like in a few years time if my asthma will get better or worse. I don’t know if I will ever be able to lead a normal life again or if I will have to take drugs for the rest of my life.

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Acid Reflux

On Monday I am having a pH test and some other bits and bobs for my stomach and for that I need to stop Lansprozole for a week before. Before I was on this I didn’t notice anything wrong with my stomach nor was I on steroids and half the medication I am now.

I have missed odd doses before and felt a little off when I laid down so thought I didn’t have acid reflux but after this week I am almost certain I do. Felt horrible after eating and even controlling what I eat, not what you want when on holiday.

I have had heartburn, bloating, changes to bowels, belching, sickness and coughing. Gaviscon helps after a while but after I first take it as it coats the throat feel I have to cough (my VCD). I have until Tuesday evening still to go and still have to have the tests that involve a tube into my stomach for 24 hours.

The treatment is diet changes, lansprozole that can stop you absorbing vitamins and surgery. The more I think about it the more I want the surgery though know I might have to take something for my stomach for the rest of my life due to the medication could mean smaller doses and don’t have to take things like B12 tablets. I hope that if this tests come back positive the gastro team will sort me out rather than leave it to my GP.

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Holiday:Day One

I hate first days on holiday we always end up arguing and ruins the rest of the holiday as I feel like I have to watch what I say or do.

This morning we started the the day with a cooked breakfast, made by Dad. When he is cooking we cant suggest things like he does when we cook.

then we went out for the morning, we picked where we wanted to go and left. We mainly picked this place as there was a fishing shop. Once there we sat in the car for 15 minutes as Dad talked to the owner. Once he brought the traditional rod (that usually ends up be replaced the next year). Dad got in the car and said we will head home this way past the shop to get the food. Luckily mum connived him to drive to the sea so could at least look at it. After 10 minutes at the beach it was I’m cold lets go.

At Asda, I noticed when we said needed something like crisps it was the first one at the aisle on offer. Not if they were nice. Eventually he snapped and it was ‘do want you want’ and then nothing you can say or do will change it. So I went and sat in the cafe out of the way. All the way home and over lunch not a word was said. Me and my sister went into town (to Starbucks) and it gave things a chance to settle and by the time we got home things were like nothing ever happened.

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Holiday

Today I go away on holiday with the family. I am looking forward to a change of scenery for a week but I do have my concerns.

I am worried i will end up in hospital I know though if I do that will be my holiday over as these days I am in for at least 3-4 days. The hospital isn’t far from where we are staying but know that eventually family will have to go home and could be left alone. My Dad is already doing the whole you better not get ill etc. making me slightly nervous.

There is also my stamina isn’t as good as it used to be I want to enjoy myself but no eventually I will crash and I don’t want to ruin things for everyone else when I cant do something.

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Assisted Dying

I am watching a documentry on assisted suicide. I dont think Im in the right frame of mind to watch it. Its giving me to many ideas. I am down in the dumps anyway I spent the weekend throwing up with a stomach bug and I think I was starting to get into theophylline toxicity so I am going to drop down my evening dose of Theophylline just in case and recheck bloods. Because I was being sick I couldn keep down any of my medciation and inhalers seemed to make me feel sicker so my chest wasn’t right.

Asthma has taken what life I had I still have this sense of adventure but dont have the body that can follow my mind, I was a free spirit now every trip has to be planned around my lungs. This isnt the person I want to be. I have struggled with dark thoughts of coping with something that isn’t going to go away. My Nan had many conditions that I am facing and just brings back memeroies of me being a child playing with her blood glucose machine and what I remember most is her legs what I now know was fluild but when I was a child they were ballons, she waddled and could make it to the kitchen and back. My Nan was old but what she suffered I could have in the next 10 years. I dont want to be a young person in a Care Home. I also dont want to burden my family with the care home bill nor the burden of caring for me. Its not like I will have a loveing husband anytime soon that will stick by me.

Anyway, I am watching a show about a man with Alzheimer’s going to Switzerland to look into the assisted dying center and meeting people with degenerative conditions such as MS. They do not mention conditions such as asthma and Chrons that can have massive impact on life. I do understand conditions such as MS make the decision the decision to remove care harder as generally it is a slower process and the person is less likely to be able to make the decision due to being dosed up with painkillers and therefore not at sound mind. However the conditions have the same effect on state of mind as they both grind you down. When I die I don’t want it to be a massive panic, I don’t want the peace of something assisted suicide can give and the time you know yes it is the end an the time to say what you want. Though people say it isn’t important the last things you say but for some it will be the last thing is what you remember. Important life moments such as birth’s and deaths you remember. Like I remember the moment i found out about when my Nan died and the moments around my Grandad. Death in emergency with CPR is not pretty. I have been to times when you know your not going to win but have to jump hard and break and bruise these people in order to protect yourselves. I totally agree in DNR’s and think that the resuscitation protocols need to be reviewed.

Death is a hard subject, who should say if you live or die. Some spotty noised Uni graduate on a big yellow taxi with a God complex or a team of people or should you be given the choice. Yes at times that choice is not yours for the making but then it should be left to the people that know you. Though in the heat of the moment all you want is your loved one to be with you, breathing and feeling. When doctors make decisions on DNR’s and when to remove care they involve the family and they look into quality of life. What defines quality of life to a doctor I have a ok quality of life so all care would be offered until there is nothing left to be done but to me my quality of life is poor but not at the stage to refuse treatment and remove all care.

Overall I agree assisted suicide if regulated is appropriate, yes it might not be right for all. At wont point do you say enough is enough and what makes one condition appropriate to end it. Some people have opted for assisted suicide as they are tired of life. It shouldn’t be the legal way to kill yourself in the darkest moments of depression.

In the darkest moments of depression you cant think of the other side so can see why people follow this option, though there is often one if willing to say that’s enough. Tonight killing myself has seemed like the easy option to solve all my worries, and not burden family but then the moments of clarity come though and realise its just a bad day and the pain over wanting to kill yourself for those left behind can be unbearable when still have a life to live.

Watching a man knowingly take a toxic drug was weird, he almost was taking a shot of gin. the mean less chatter didn’t seem right. I think was expecting some heartfelt moments some pearls of wisdom to carry on but I suppose what do you say when you know you’ve just killed yourself and spent 400 odd years with your loved ones. It didn’t seem as calm as just going off to sleep he said “be strong my darling” coughed and then was gaging, then started gasping hos last breaths. His head flopped forward and the gagging stopped. It was more dignified that crash call’s in hospital but not as peaceful as I expected.

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Home

After the first few eventful evenings in hospital, I am now home. First thing I did when home was have a bacon sandwich and fall asleep on the sofa. Now few days after things are almost normal. Overnight packed again ready for its next use, steroids popped into dosset box and written my notes from admission which I always do just in case as discharge letters aren’t great. Made an appointment with asthma nurse at hospital haven’t seen him for a while and thing need to build a relationship with him.

Chest wise it is better though still coughing up allot of rubbish and getting hot sweats. I was borderline infection when I was in so just keeping an eye on it for time being. I am still very tired. Every attack is now taking that little bit longer to get over sleep wise. I have about 10 days until I am due to go on holiday so fingers crossed will be back to bouncing back. After few days of PJ’s got to go out tomorrow and sort out a few little jobs.

I have started on little project, I am hoping to move out soon so have started collecting together the recipes I like out of my mums and going to type them out and laminate them so it is giving me something to do. I cant wait to move out.

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A Doctor’s Letter To Patients With Chronic Disease

Dear Patients:

You have it very hard — much harder than most people understand. Having sat for 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I, too, can’t understand what your lives are like. How do you answer the question, “How do you feel?” when you’ve forgotten what “normal” feels like? How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue? How do you decide when to believe them or when to trust your own body? How do you cope with living a life that won’t let you forget about your frailty, your limits, your mortality?

I can’t imagine.

But I do bring something to the table that you may not know. I do have information that you can’t really understand because of your unique perspective, your battered world. There is something that you need to understand that, while it won’t undo your pain, make your fatigue go away, or lift your emotions, it will help you. It’s information without which you bring yourself more pain than you need suffer. It’s a truth that is a key to getting the help you need much easier than you have in the past. It may not seem important, but trust me — it is.
You scare doctors.

No, I am not talking about the fear of disease, pain, or death. I am not talking about doctors being afraid of the limits of their knowledge. I am talking about your understanding of a fact that everyone else seems to miss, a fact that many doctors hide from — that we are normal, fallible people who happen to doctor for a job. We are not special. In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help. We want to cure disease, to save lives, to be the helping hand, the right person in the right place at the right time.

But chronic, unsolvable disease stands square in our way. You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you. We don’t want to face things we can’t fix because it shows our limits. We want the miraculous, and you deny us that chance.

And since this is the perspective you have when you see doctors, your view of them is quite different. You see us getting frustrated. You see us when we feel like giving up. When we take care of you, we have to leave behind the illusion of control, of power over disease. We get angry, feel insecure, and want to move on to a patient who we can fix, save, or impress. You are the rock that proves how easily the ship can be sunk. So your view of doctors is quite different.

Then there is the fact that you also possess something that is usually our domain: knowledge. You know more about your disease than many of us do –- most of us do. Your MS, rheumatoid arthritis, end-stage kidney disease, Cushing’s disease, bipolar disorder, chronic pain disorder, brittle diabetes, or disabling psychiatric disorder –- your defining pain — is something most of us don’t regularly encounter. It’s something most of us try to avoid. So you possess deep understanding of something that many doctors don’t possess. Even doctors who specialize in your disorder don’t share the kind of knowledge you can only get through living with a disease. It’s like a parent’s knowledge of their child versus that of a pediatrician. They may have breadth of knowledge, but you have depth of knowledge that no doctor can possess.

So when you approach a doctor –- especially one you’ve never met before -– you come with a knowledge of your disease that they don’t have, and a knowledge of the doctor’s limitations that few other patients have. You see why you scare doctors? It’s not your fault that you do, but ignoring this fact will limit the help you can only get from them. I know this because, just like you know your disease better than any doctor, I know what being a doctor feels like more than any patient could ever understand. You encounter doctors intermittently (more than you wish, perhaps). I live as a doctor continuously.

So let me be so bold as to give you advice on dealing with doctors. There are some things you can do to make things easier, and others that can sabotage any hope of a good relationship:

1.Don’t come on too strong –- yes, you have to advocate for yourself, but remember that doctors are used to being in control. All of the other patients come into the room with immediate respect, but your understanding has torn down the doctor-god illusion. That’s a good thing in the long-run, but few doctors want to be greeted with that reality from the start. Your goal with any doctor is to build a partnership of trust that goes both ways, and coming on too strong at the start can hurt your chances of ever having that.
2.Show respect –- I say this one carefully, because there are certainly some doctors who don’t treat patients with respect, especially ones like you with chronic disease. These doctors should be avoided. But most of us are not like that — we really want to help people and try to treat them well. But we have worked very hard to earn our position — it was not bestowed by fiat or family tree. Just as you want to be listened to, so do we.
3.Keep your eggs in only a few baskets –- find a good primary care doctor and a couple of specialists you trust. Don’t expect a new doctor to figure things out quickly. It takes me years of repeated visits to really understand many of my chronic disease patients. The best care happens when a doctor understands the patient and the patient understands the doctor. This can only happen over time. Heck, I struggle even seeing the chronically sick patients for other doctors in my practice. There is something very powerful in having understanding built over time.
4.Use the ER only when absolutely needed –- Emergency room physicians will always struggle with you. Just expect that. Their job is to decide if you need to be hospitalized, if you need emergency treatment, or if you can go home. They might not fix your pain, and certainly won’t try to fully understand you. That’s not their job. They went into their specialty to fix problems quickly and move on, not manage chronic disease. The same goes for any doctor you see for a short time — they will try to get done with you as quickly as possible.
5.Don’t avoid doctors –- one of the most frustrating things for me is when a complicated patient comes in after a long absence with a huge list of problems they want me to address. I can’t work that way, and I don’t think many doctors can. Each visit should address only a few problems at a time, otherwise things get confused and more mistakes are made. It’s OK to keep a list of your own problems so things don’t get left out –- I actually like getting those lists, as long as people don’t expect me to handle all of the problems. It helps me to prioritize with them.
6.Don’t put up with the jerks -– unless you have no choice (in the ER, for example), you should keep looking until you find the right doctor(s) for you. Some docs are not cut out for chronic disease, while some of us like the long-term relationship. Don’t feel you have to put up with docs who don’t listen or minimize your problems. At the minimum, you should be able to find a doctor who doesn’t totally suck.
7.Forgive us –- Sometimes I forget about important things in my patients’ lives. Sometimes I don’t know you’ve had surgery or that your sister comes to see me as well. Sometimes I avoid people because I don’t want to admit my limitations. Be patient with me –- I usually know when I’ve messed up, and if you know me well I don’t mind being reminded. Well, maybe I mind it a little.
You know better than anyone that we docs are just people –- with all the stupidity, inconsistency, and fallibility that goes with that –- who happen to doctor for a living. I hope this helps, and I really hope you get the help you need. It does suck that you have your problem — I just hope this perhaps decreases that suckishness a little bit.

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ITU

Yes I have been captured, had a feeling was coming but was hoping to get enough warning to head to Southampton but no was at the cinema. Managed to watch the whole film just about.

I was taken in and given the works then the moved me to another hospital and that upset my already twitchy lungs so that night got worse and ended up on ITU ad my gases were going abit all over the place so wanted to keep a closure eye on them. I was on BiPAP for a number of hours and now back on the ward trying to make progress where back to where I was before my trip.

One thing I notice is ITU nurses not used to talking to patients the number of times they came over and was doing things to me and weren’t telling me what or even asking if I was OK. ITU nurses seem a breed of there own not used to talking to patients or having a patient that is idependedent to get out of bed etc.

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