Asthma UK community forum
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4 years and still lost--my intro

Hello. I thought I would just introduce myself and why I joined the community.

Honestly, it is the first and only community I have found of asthmatics. I live in Japan, am from the US, but have found that the UK has been the best resource for me since I was diagnosed in 2014.

I don't know the exact details of my asthma. I know the triggers---exercise, cold/dry weather, weather changes, pollutants such as pm2.5, perfume, etc; colds and viruses, and apparently dust mites. I have no allergies, though, and it is a coughing-variant, which means I don't wheeze at all. What makes things worse is I feel like my asthma is very unusual. My peakflow is usually high--my best is 560, but I have been hitting 590 lately. I feel like I am in low-yellow zone when I hit 545, and I feel like the red zone at 480--even though those feelings don't match up with the percentages. I am terrified of finding out what red zone actually feels like, to be honest. I have not had oxygen levels below 97, though I have a high heart rate.

Winters are always the worse. During the brief couple of months of hot, humid summer weather, I can do everything under the sun with very little impact from Asthma. Once the weather starts changing, my QOL goes down hill and I find that I can barely do anything for several weeks. It gets very depressing. In september I was running around, playing with my dog, taking long walks---and now, I am barely able to climb the stairs or even bend over. The last two months have put me in a place where I just want to cry.

I ma currently on Flutiform and Spiriva for my daily (the former at 3 in the morning, 2 in the afternoon, and 3 in the evening: the latter at 2 in the afternoon) and my reliever (I call it my emergency because of Japanese translations) is Meptin Air.

I used to be very reluctant in using my emergency, but with a recently very bad exacerbation, I decided to go full-aggressive on my asthma and take it for every little thing to see if it helps at all this winter. So far...it feels the same, though I suspect that if I had avoided my reliever, it would be worse right now. Basically, I went from taking it only when I desperately need it to taking it about 3 times a day. I desperately want my life back, for things to be like the summer time, but I am always lost on what to do. We are going to remodel our house soon (it is a super old Japanese house from 47 years ago. Yes, the mold and such are horrible in this house, so that doesn't help.) I am hoping the remodeling with help somewhat by clearing up some of the possible triggers in the house itself. I am not holding my breath, though (hehe).

Anyway, I joined this community in the hopes of finding people like me: who are still lost and confused about asthma and struggling to get their life back. I don't know if I am mild, moderate, or severe (I have never been in the hospital, though before I was diagnoses, I had coughing so bad it felt like it could break my ribs). I don't know if it is brittle or refractory or anything at all. I just know I have coughing-variant asthma, most triggers are out of my control, and my life sucks about 80% of the year. I do see my doctor monthly, but Japan doesn't even have an action plan! (I had to make my own), and sometimes I doubt that I am getting the care I need...though he is one of the top specialists on lungs and whatnot. Prednisolone does work magic when I am at my worse, though.

If anything, I am hoping to find support outside of my wonderful husband and his family (they do so much for me) and maybe advice when I am feeling at my worse and like I have no where else to turn. Mostly, I will lurk and read all the posts though XD

4 Replies
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Welcome to the group. I hope you can find your way around the web site.

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Thank you! It's a little unusual in format, but I think I am figuring it out ^_^

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Hello, I recently joined this forum too and have found it very helpful. As well as various allergies and asthma I have MCS - multiple chemical sensitivity. As you mentioned reacting to perfumes I just wondered if you find you feel ill around other chemicals? For instance gloss paint and news print give me migraine headaches. There is some information on other websites about chemical sensitivites which are allegegies and not well recognised by the medical professeion generally. You will find information on the internet by looking up "Environmental Illness". I found cleaning up my house and minimising the number of chemicals at home helps enormously - including no perfumes in toiletries or cleaning products, new products fumed off especially plastics etc. which give off gases for the first few months. Hope you find what works for you.

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Hello! Thanks for the reply. I don't get migraine headaches or anything like that, but I find that strong perfumes and smoke can definitely trigger my asthma. I have had to leave restaurants because of it. I can generally tolerate some chemicals, but only in a well-ventilated room. I tend to leave the area if it feels to much, but I have not had many problems with perfumes in toiletries and whatnot. If it is light and not overpowering, I seem to do okay.

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