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When I Realized I Was Blaming Myself for My Asthma

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“Why?” is really a very aggressive question… but I keep asking it.

My asthma has been very challenging for the last couple of months. I ended up being admitted to the hospital twice and also spent several hours in the emergency room on another occasion. The need to ask why is percolating through my mind and it is starting to get on my nerves.

I seem to think that if I can find out an answer to why, then I can make a difference to my illness. But, that actually isn’t the case with adult onset asthma. I have had this chronic illness diagnosed for about three years.

This has been a huge learning curve for me. I have learnt about relievers, preventers, steroids, spacers, oxygen saturation levels and peak flow levels. I have learnt breathing exercises to do to improve my lung function. I have learnt what triggers affect me. I have learnt to be cautious regarding my activity levels throughout the day. But, “Why?” still haunts me!

As a former teacher, I knew not to ask kids, “Why?” when they had misbehaved because it is aggressive. It implies blame. It automatically puts a child into defense mode. “Why?” is like an attack. And, now I am doing this to myself.

But, I keep trying to figure out “why.” At 68 years of age you would think I could apply what I know about “why” to myself. But, I still seem to seek a explanations.

Asthma is a complex illness. When it was first diagnosed the lung specialist reeled off a long list of things that could be causing it or contributing  to it: reflux, sleep apnea, allergy, exercise, dust, pollen, smoke, being overweight, hay fever, history of allergy and eczema... and then he said it was probably a combination. I could tick “all the above.”

Today, I have finished a 12 day course of prednisone. I have showered, done a bit of cooking and washed up. Then I started coughing non-stop. I am a cougher asthmatic. After eight puffs of reliever, sitting and breathing according to my exercises, the episode has passed. My chest is hurting and I now have that salbutamol headache that fellow asthmatics will recognize. And, the shakes. Then comes the “why” into my head.

It’s like I need to take myself to task for being ill. How ridiculous is is that?

I want to put “why” into the same category as “should” and give myself a break.

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Trying to Regain Confidence After an ER Doctor Made Me Question My Illness

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“Pick yourself up, dust yourself off and start all over again!”

These are the words of a fairly old song. They have been resonating in my head all day long today.

I do wish emergency professionals would respect that you know what your chronic illness is and what it does when it goes out of control!

I am trying to pick myself up after being told, “I can’t hear anything in your lungs. Are you stressed? Asthma and panic attacks are very similar. Maybe it’s a panic attack!”

 

Was this nice-looking, young (compared to me) doctor trying to tell me this was all in my head? I really don’t need to hear that! It doesn’t actually help me one iota! I don’t care if he can’t hear wheezing (my major chronic illness is asthma). I have never ever wheezed! But my peak air flow drops low. I have a tight band pressing in on my lungs. I can’t get enough air. I feel dreadful. I feel exhausted. I look as pale as a ghost. I can’t talk properly. Isn’t that enough?

Who in their right mind will front up to the hospital’s emergency department on a Saturday evening? Well, it isn’t my choice of where I want to be on a Saturday night! Doesn’t the doctor understand that even deciding to go to the hospital is a big deal for me?

I read my asthma plan, I checked my oxygen levels and my peak flow. I tried to breathe deeply. I tried to be calm. All the literature says, “Go to emergency if your breathing isn’t improving.” It’s safer there than at home! So, that’s what I did.

I am 68 years old. I have had asthma for three years. None of my children have asthma. I have never been around anyone with asthma. It is fairly new territory for me and my husband.

I know my body’s signs of impending problems quite well now! I can feel it in my chest! I now know how quickly an asthma attack can escalate. It becomes extremely frightening very quickly. And yes, being unable to breathe does bring panic! The panic is an effect of the asthma, not the cause.

Last night, I had already had 40 puffs of my salbutamol reliever in one hour… That’s doing what my asthma plan says. And, I was already finishing a course of prednisone. It was getting harder and harder to breathe and I was starting to cough! I prevaricated for another 20 minutes and then decided to go to the hospital…a 15-to-20-minute drive away. I did consider calling an ambulance too.

After waiting 20 minutes in the waiting room, my breathing was starting to calm down having had another four puffs of salbutamol! So, I guess the crisis was starting to pass. There were no beds available and no chairs available so they couldn’t put me on a nebulizer. That’s why I went to the hospital – I knew a nebulizer would really help me. After 20 minutes they took me to the inner sanctum of emergency medicine. I got hooked up to monitors. No nebulizer.

After about four hours we came home. It cost $200 (Australian) to have an earnest conversation about how my oxygen saturation, pulse and blood pressure were staying fine so maybe I was just stressed and panicking, maybe I hadn’t had an asthma flare-up! The doctor said he could find no signs of asthma.

No, doctor, you are wrong! I do have asthma. Yes, it was an asthma attack! My lung specialist has never heard a wheeze either, but the spirometry tests show I have asthma! Yes, after three hours my breathing had stabilized. After a huge amount of salbutamol too…  Enough to give me the shakes, keep me awake all night and give me a massive headache!

I have spent today very quietly. My head has been dwelling on what happened. I am constantly questioning myself. Today, my peak air flow has been below 300 all day… That means I need to be cautious regarding any activities I do. I have felt off all day and extremely tired too. My chest is still tight, I am still extremely short of breath.

But, the very earnest conversation has left me feeling really low. I feel I have to rebuild myself. I feel despondent and incapable.

It has shaken my ability to believe I can manage this illness. I feel I can’t trust myself. Mind you, this doctor was kind and reassuring about coming to the hospital. “It is the right thing to do when you can’t breathe.” But I left there thinking it must be “in my head.” This is not a nice way to feel.

I have had to work so hard to accept all the limitations asthma has brought into my life, emotional and physical. This has been quite a big setback for me. I must dust myself off and get going again. But how do you do this? The emergency doctor has immense power and authority and I am giving him more credence than I am giving my own body and my own experiences!

But, I am not very confident in my judgment now. I am not sure of how I will be able to make that decision to go to the hospital or not to go next time! Today I feel very reluctant to go back there when I am in trouble.

How do others deal with these sorts of setbacks? How do I regain some confidence in my judgment of my body?

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When Your Doctor Says, 'This Is as Good as It'll Get'

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How do you react when this is what your doctor says to you, “This is as good as it’ll get?”

Swallow hard, try not to cry, get angry, feel sorry for myself. All of these.

I had forgotten that my doctor said this to me about a year ago. I did become accepting of this at the time. But in the last year I had forgotten that I needed to understand this and live accordingly.

I like to get my own way, like most people. I rail against injustice and I try to make things happen by taking what actions that I possibly can. But with your body and chronic illness, there isn’t a lot that you can do. My illnesses have happened through no fault of my own. They are part of me. It isn’t a matter of “losing weight,” “eating properly,” or “exercising.” Nor is it because of me making “poor choices.” My immune system just isn’t working properly!

All I can do is take one day at a time. And in that day I will do the best I can with what the day brings.

Today my lungs were in “OK zone.”

“Great,” I thought, “I can go for a walk.”

But, then I experienced hypoglycemia. That wasn’t appreciated. That wasn’t expected either! So I have rested and done what I need to do to manage the hypo. No, I wasn’t able to do what I had wanted to do today. The daily journey can change an instant. I can’t afford to let that get to me and bring me down. Life has plenty of challenges and my illness is just one of them.

The consequences of forgetting “this is as good as it’ll get” has not been good. I had a short period of respite with my asthma, where I felt on top of the world. I started to have expectations of each day. I started to push myself. I started to do more and more. I started to think “I am getting well! This illness is controlled and controllable.”

Wrong.

I even failed to make a follow up appointment with my lung specialist because I thought I had become so well that I didn’t need to see him any more. I thought the asthma was at bay and I would stay well.

Positive thinking is OK. But, reality is much more important in my opinion. My illness, asthma, had not gone away. It has been back with a vengeance. Two hospitalizations within five weeks, with overnight stays. So, my asthma is actually now worse. And yes, I became quite desperate to get an appointment with my lung specialist too.

I have just remembered my lovely doctor saying, “I am sorry, but this is as good as it’ll get.”

If I remember this every day, I think my life with chronic illness will be much easier to deal with.

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What You Should Know About Asthma for the New School Year, From an Asthma Mom

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It’s that’s time of year. Kids are back to school and most parents are overly joyed!

But, if you are a parent whose child has asthma, you’re likely a damn nervous wreck. My son has already experienced his first flare-up after only seven days back at school.

Many people do not understand how serious asthma is, so I’m going to fill everybody in. It’s an invisible disease. You can not see asthma. One too many people have said, “It’s just asthma,” to me recently. And guess what? These few things could kill children with asthma. So please read these facts and understand what harm simple things you’re doing might be putting your friend, neighbor, and/or family member with lung disease at serious risk.

1. Germs! Please, if you have a child who is sick, keep them home. What may be “just a cough and fever” to you, could be a respiratory infection for weeks, hospital visit, or could nearly kill an asthmatic child.

2. Keep bonfires, grills, smoking meat, burning yard waste under control. Yes, those will cause life-threading asthma attacks if not controlled. It’s that time of year where it gets chilly, and people love to do these things. I’m not saying don’t have a good time. But be respectful, contain smoke, and understand these smokes can, again, kill someone with a lung disease.

3. Statistics: 1 in 10 children have asthma. Over six million children have asthma, and each day 10 Americans die from the condition. Don’t ever tell someone ” it’s just asthma they’ll grow out of it.” We need better air quality laws, and knowledge of not spreading illness. It will save many lives.

4. Please stop smoking around any kids, lung disease or not. They need fresh air. Obviously, it’s an issue because asthma rates are still on the rise from unhealthy air qualities and other factors.

5. My son is embarrassed by his asthma, and my hope is to make this all ” common sense” as he grows up. To not feel embarrassed by his inhaler. That people understand lung disease better.

I’m a mom, desperately trying to keep my son healthy and alive. And there are many people in my shoes. My job is to educate more people about lung awareness, so my child, and yours can enjoy their life!

So please share this, to help keep these children and adults alive.

Sincerely,
A tired, anxiety prone, scared for the future,
Asthma Mom

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When You're Ill, It's OK Not to Be OK

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I saw my asthma psychiatrist yesterday. I completely love her. (Not in the “patient falls in love with their doctor kind of way” – just in that she’s so lovely and good at her job.)

When I first started going to the respiratory department at Queen Alexandra in Portsmouth and they said I had to see her as a holistic approach to managing my asthma, I was like, “That will be one appointment. No way am I the type to sit and spill out my problems… plus it’s not bad enough that I need help.”

How wrong I was. I had high levels of anxiety and I was genuinely grieving the loss of my job and life as I knew it, so I was actually quite depressed.

I worried constantly about the effect I was having on my children and my family in general. I worried I was doing something wrong and it was my fault I was so ill. Or somehow I was making it up in my head and causing the symptoms. Because there had to be something I was doing wrong. And when I wasn’t worrying about those things, I’d obsess over any random thing. To me, it was a part of who I was and it was something I had to deal with on my own.

She helped me so much. I’m not going to tell you these problems have all gone away. Or it was easy. I have to work at it. Some days harder than others. But I understand them. I’m not alone. People might not get how it feels, but they want to help.

Some things she was quite blunt with. She reminded me that I wasn’t “making it up” – and that she could show me scans and tests that show it isn’t, and so on. And at the time I felt a bit stupid, like I’d been told off. I kind of looked at my feet and didn’t want to talk to her anymore. But, afterwards, a big weight kind of lifted and I could see things a bit clearer.

She also told me that I don’t have the kind of power I seemed to think I had. Bad things don’t just happen, and I can’t control it. Worrying about it won’t effect what will happen. And, after a while, I began to see how much pressure I was putting on myself.

Other things required me to talk it out and lead myself to answers and ways to help myself.

Yesterday we agreed I probably only need three more sessions, which is sad because I like her. But, when I walk out of there, I walked taller. I have worked through something I was so determined could not be done and I didn’t need help for.

I am writing this because I think sometimes we trivialize asthma as a society. It makes us think our illness isn’t “that bad,” and so all the problems associated with it aren’t genuine. You know what? Yes, sometimes asthma is mild or well-controlled and those with the condition can lead a relatively healthy life. I’m not going to say that it’s a walk in the park for even those people though, as having a cold or being in contact with an allergen can be a nightmare. However, in general, they can do the stuff they want to do.

But sometimes it isn’t like that. I can’t walk up the stairs or have a shower some days. I’ve ended up in the resuscitation room enough for the nurses to know me. Then I am in wards with older ladies who smoked for 50 years. I’m 31 and never smoked. It feels unfair and that I shouldn’t have to be there. But I am because what I’m suffering with is serious. And when it seeps into every part of your life because the bad days are more often than not, it’s genuinely life-destroying and heartbreaking.

The medication we take can have absolutely horrific side effects. I have to sit and force myself to take my steroids some days. I feel sick at the thought of them because I know they are causing me so many problems. Then do you know what I feel? I feel guilty that I feel that way. It often feels like others have to deal with much worse medication and side effects. And some do, but that doesn’t make my feelings on what I am dealing with wrong.

I spent probably more than two years torturing myself and thinking I needed to deal with it on my own. I was lucky I was kind of forced into getting help. I know not everyone is that lucky.

If you are struggling with any illness, please ask for help. It doesn’t have to be as hard as it is. Asking for help does not make you weak or less of a person, and it won’t bother people – like I thought I would be. It’s why the services are there. Think of it like you are taking control back. You don’t have to deal with all the rubbish alone.

I know it’s cliché that asking is the hardest part, but I get that it is. And starting to talk is no walk in the park. But you will get through the other side. They might not make your illness go away, or even your problems, but you will know how to deal with them. I hope it will make your life so much happier.

Follow this journey on Eat. Sleep. Weeze. Repeat.

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I Have Asthma and Diabetes, but I Am More Than an 'Asthmatic' or a 'Diabetic'

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It is too easy to myself identify as my illness. To describe myself as an “asthmatic” or as a “diabetic.” A friend said to me, “You are not your illness.” Wise woman. I try to call it “the asthma” and “the diabetes.

The illness can take over all of my thinking time and all my activities can be about being ill, e.g. constant medical appointments, if I let it.

 

I can spend so much of the day checking how I am going, monitoring medication, and in doing that, I forget to do things that are more life-affirming.

I am ill. But I am more than a chronically ill person. I am still a wife, mother, grandmother, aunt, friend, swimmer, a sewer, a church member etc.

So, now I talk about the asthma and the diabetes. They are not mine. It is not my asthma, nor my diabetes. Each of them is a dreadful illness. Each of them can be life-threatening if not managed properly. Each contributes to the other. Each chronic illness has had quite a severe impact on me, my friendships, my family life, what I can and cannot do – virtually every aspect of my life.

By calling them “the illnesses” I feel a little more in control, not that the asthma is particularly well controlled. I feel a little removed from them. I feel a bit distanced and put them aside for a few hours of each day. The illnesses don’t get to take over 24/7. I have some mental respite some of the time.

I much prefer to be called a mum, wife, aunt, swimmer, etc. than an illness. I am not just the asthmatic in the group. I am me who happens to have to manage the illness called “asthma.” I, Rosemary, am dealing with “the asthma.”

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