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Feeling like no one believes me!
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katieanne3 posted:
Hello everyone,
This is my first time posting, even though I do read the community board often. I have had asthma now for about 4and a half years with one ER visit. The problem I am having is my family believing me. I had the flu two weeks ago and have not been able to completely resolve my symptoms. I did have a prednisone taper at that time.
I am having a worse flare up now and have trouble sleeping, so the mornings are a mess and I have little energy all day. Today, I was told by family " You sound ok" and got shrugged off. Even though I stated that I have been having trouble. Is there something I can say or do to help with feeling believed. I don't want sympathy, just acknowledgment or someother reaction.
Thanks for your help
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Laura0711 responded:
Hi Katieanne,
I know what you are going through I have the same problem with my family. My Dad likes to think all my problems are in my head because of some mental health issues I have. I have learn to ignore them because no matter what I say they will not believe me. With the help of this broad and some very important friends I met here I get through the troubles I have. If you are having a worse flare now you might need to go back on the prednisone because you may have not been on it long enough this happens sometimes you'll stop your prednisone and your symptoms get worse. By saying "you sound ok" I assume that they mean you weren't wheezing you might try showing them some information on asthma were it shows that you don't always wheeze. Personally for me I almost never wheeze I just get really tight in the chest, sometimes I cough but mostly I just have chest tightness.

I hope this helps you. Just know you are not alone you can always post on this broad and get some support.

Yours,

Laura
 
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deluxehd responded:
I also totally understand. I believe that most of us just want family to understand the disease and accept that we have it. I still struggle with family members understanding and recognizing when I'm having problems breathing. Recently I was at my brother's home and spent majority of the time coughing, had a raspy voice and even used my neb. Spoke to my Mom a few days later and she didn't even notice any of it. That makes me sad. On the other hand, I usually stay away from family when I am having trouble. I don't let others see me bad. I even shared the "Spoon theory" with my Mom and she made no comment after reading it. I am very thankful that my husband understands and recognizes when I'm struggling.

I also get the "you sound ok". I don't wheeze externally. My voice change is what people hear. But I can have chest tightness and SOB without my voice changing. My body language and mood change with breathing issues. You would think the people could notice this.

I didn't mean to go off and vent about myself. But we understand. Take care and feel free to ask questions and vent.

Debbie
 
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Mathchickie replied to deluxehd's response:
It's particularly difficult with parents. I live with several chronic illnesses, and when I was first diagnosed with the first one, my parents really didn't handle it well. (Ironically, so many people around me have asthma that no one who matters has failed to accept my limitations in that area!)

You just don't want to believe your child isn't perfect, is what it often comes down to.

One thing to do would be to keep it concrete, such as, "I can't do ABC right now, because I'm not feeling well, it would help me a lot if you could..."
 
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sgbl88 responded:
So sorry you have been sick.

Getting over the flu for an asthmatic takes much longer that for the average person. Unfortunately too many people that don't live with this disease just don't get it. For me the worst is my husband.

There is a story called "Spoon Theory" and web site that does a pretty good job explaining some of the issues. I can get the link later. That could help.

You might try taking a family member to a doctor's apointmnet with you and having the doctor explain thing to them. That didn't help me much, but my spouse ti anti-doctors soooo... his underliing lack of trust of a doctor really factors into his whole philosophy.

Why people can't understand the sleep deprivation along with the extra work required to just get air into your lungs, plus the fact that your lungs are not exchanging oxygen quite as well as they should affects every aspect of your life excapes me. It is exhausting!! And no you don't have the energy to run a house like you would like to.

On the mean vengeful side, you could keep a family member up with you while you are restless with a flare. lol Let the experience the sleep deprivation you life with.

It sounds like you need to see your doctor for more treatment. You may need some prednisone and it definitely sounds like you need round the clock, as prescribed use of your rescue medication or nebulizer. A pain in the rear, but it is very effective.

Take care and feel better.
God bless.
Sonya
Jeremiah 29:11 For I know the thoughts that I think toward you, saith the LORD, thoughts of peace, and not of evil, to give you an expected end... Ye shall seek me, and find [me]


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