Struggling with severe asthma and the o... - Living with Asthma

Living with Asthma
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Struggling with severe asthma and the opinions people have on my condition

Pink2000
Pink2000

Just feel like I could do with some advice or just peoples thoughts especially those who are going or have been through the same as me. So here goes, I have always had asthma ever since I was 1 years old and as the years go on my asthma has gotten much worse (specially since working in a nursery for the last 3 years). I am in and out of hospital every couple months with asthma attacks and feel like I’m on steroids a lot. I always worry about what others think of me and that I’m a burden to them. I always feel guilty when I’m off work due to asthma but I try not to show it. However recently, a few people have decided to give their opinion on my health saying things like, it’s just anxiety, it’s all in your head, it’s just mentally and your fine, your always in hospital, your ill again. Also saying some people just can’t cope well so maybe you go to hospital cos you can’t deal with it where as others can handle it better than you.

People just don’t understand how mentally and physically draining asthma is. I’m trying to rise above these people and just keep telling myself only I know how it feels like and I can’t expect people who haven’t been through it to understand. I just feel like people think I go to hospital for fun... or are simply making it up so it’s upsetting me. All I want is to be healthy.

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Hello I completely understand how you feel, asthma can be so debilitating and you sound like you have gone through a pretty tough time of it with having asthma attacks. Asthma runs in my family and I have had asthma for 5 years now and i am prone to chest infections. I have recently had pnemonia and still feel like the infection still there, so seeing a respiratory doctor tomorrow to have further tests. I find sometimes my asthma can be well controlled, but at other times I am breathless just walking up the stairs. I also find stress affects and anxiety affects my asthma. I am sure people understand and if you have attacks it’s clearly causing you problems. Have you had many reviews to check your using the right inhalers? Take care and stay safe

Thank you for replying and that can’t be easy for you either please try to stay as safe as you can. Yes always in contact with my asthma nurse and I am under the hospital to try and control my asthma as it is very poorly controlled. They keep trying new inhalers and tablets but it seems to be fine and then it stops and is bad again. Xxx

I'm so sorry, I completely empathize. I have had asthma since I was 8 but it got significantly worse in the past 10 years or so. I cannot even set foot in a house with a cat or dog and we can't have people who have pets visit or stay in our apartment as they bring in too much animal hair and I am an allergic mess afterward, often for weeks and requiring me to go on prednisone.

I am so used to suffering and feeling miserable that I've learned to function and be cheerful even when my asthma is so bad I feel like I'm suffocating. I think this contributes to people not understanding how ill I really am.

It's also really hard when we make new friends for them to understand how limiting my condition is. I will happily meet people in bars and restaurants and for activities but if they have pets, our socializing at home is limited to outdoor only.

People who've known me for ages and have been in the hospital with me understand but new colleagues, friends, and many of my family members just can't grasp how bad it is. They often try to make helpful suggestions but they're so frustrating, like, have you ever tried allergy shots / benadryl / accupuncture / cutting out dairy etc? It's like, you don't understand how severe this life-threatening disease is!

It makes you want to set them down in front of a computer and force them to read up on severe asthma, even just for five minutes...!

Know that we get it here in this community! We really do. Sending a hug.

Thank you so much and sorry to hear about yourself! It really isn’t easy. Sending lots of love to you too x

Boy, can I relate! You can read about my life with severe asthma at AsthmaOdyssey.com, but here are two things that might help.

The Asthma & Allergy Foundation of America (aafa.org) has a lot of helpful resources, from Asthma Facts to tips for reducing your triggers (print out some of the one-page fact sheets and hand them out at work, to friends and family members. When they make comments like that, if possible, immediately pull up the aafa.org website (or cdc.gov). Then say, “ well, let’s see what the top doctors in the country say about it.”

The second idea involves some new medication, but first — what country do you live in? If it’s the US, do you have health insurance/Medicaid?

There are some new medications that approach severe allergies (like to animals or peanuts) or uncontrollable severe asthma. They use a completely new way of treating them. The drugs are a type called “biologics,” and are injections — not like allergy shots.

One drug is called Xolair. It, over time, decreases allergic reactions. I am seriously allergic to all kinds of things: animals, nuts, eggplant, apples, peas, wool, perfumes, all kinds of pollen and dozens of other things. I began the Xolair injections in 2012 and I slowly became more tolerant. Now I can be around cats or dogs without getting sick, although I don’t hold one and pet it. Accidentally getting a bit of nut in a bite of dessert won’t require me to use my Epi-pen (but I won’t purposely eat a nut).

Another biologic I take is for eosinophilic asthma. It turns out that the cause of my severe, uncontrollable asthma was a particular white blood cell in my body. It should have only come out when I was fighting a parasite or certain other rare situations. But for some reason they don’t yet understand, my body started producing huge numbers of these particular white blood cells, eosinophils (Ee-oh-SIN-oh-fils), and they began attacking my body, especially my lungs.

There are a couple of different drugs to treat this problem — I’m on Fasenra, which in my case, has had a miraculous impact. It’s not a cure, and cannot repair all the damage, but in the two years I’ve been on it, it has made a huge difference for me.

These drugs are obscenely expensive BUT the companies have “compassionate care” programs, where your doctor can apply for you to receive it free or for a very small copay. If you are on Medicare or Medicare, it’s covered.

I’d strongly encourage you to discuss whether or not you might have eosinophilic asthma (frequently called “eos asthma”), and whether you might be a candidate for one of these medications.

Good luck!

Thank you so much

I certainly understand the mental and physical fatigue that goes with asthma and steroid use. It is a challenge. Like d2read, I have easonphilic asthma, and have been using Nucala injections for about 4 months. This has made a tremendous difference.

I feel your pain...my asthma has gone from mild to severe over the years. I took Xolair injections (for allergic asthma) for 10 years and it worked great, kept me off prednisone. I tried Nucala but it didn't seem to help. Every 5 years or so I need the doctor to change up my inhalers. I also got tested for food allergies and have been feeling much better now that I've eliminated those foods. I also started taking a tablespoon of local honey every day to reduce my nasal allergies during the spring - a sweet medicine! I feel like once I get it figured out, something else starts to bother me. It may be worth having a sit down with your doctor and finding out what other options you have. Best wishes!

I completely understand how you feel! I just got diagnosed 2 years ago at age 55 with Asthma. It was moderate persistent now it is severe persistent. People do not understand how it is not to be able to breath. My main trigger is anything that is scented or irritants. Perfumes, air freshners, cleaning products, Lysol is the worst. But I had to give up my job due to people coming in the office with perfume on and the cleaning lady not using unscented products. I was outside trying to get my breath more than I was working. My employer just would do nothing to help me so that I could keep my job. I decided that my health was more important. People need to be more understanding and not say foolish things to someone that has trouble getting their breath or being sick a lot. I have bronchitis a lot and sinsus infections that really puts me in a flare. So I understand and I wish you the best.

Asthma is so misunderstood by so many.if they don’t suffer from it is difficult for others to truly appreciate how debilitating it is and can be. The elevator at my job was continually breaking down, the only staircase was on the opposite side of the block long bldg with no parking near the staircase. The stairs are bad enough, but to make that walk in the colder weather was absolute torture for me. Eventually got to the point that coworkers had to drive me around. Then there were the chemicals used to clean,which immediately sent me into an attack. Many thought I was being dramatic, until the day they needed to call an ambulance because I couldn’t breathe. And still many don’t take it seriously, not only is it hurtful, it’s downright insulting. I found a new pulmonologist, he checked my eosinophil count and added Nucala to my meds. It’s a biologic injection once a month, I am on my 10th month, and I have only had one attack (I did more cleaning than I should have) normally a mild attack would put me down for 2-3 days, with Nucala I was down the one day. Dr said it will not cure the asthma, but it will lessen the effects and shorten time to recover...sure enough it has. If you eosinophils aren’t high, try an adjustment to your treatment regimens or different meds...

I have had asthma for more than 50 years. Every time I have a rough patch, everyone has an a opinion about what I could do better. I have a good doctor with an asthma action plan. I have also had intermittent FMLA to help me take time off when I need it. Some of my coworkers are more supportive than others.

Hugs and prayers for answers.

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