As some of you know I had a bad summer asthma wise that has improved a little now the weather has become cooler. I’ve accepted the fact that my asthma is now going to take a lot more management than I’ve become used to and attacks are now a definite possibility (although I’m doing everything in my power to stop that happening!) I’ve had to make some life style changes, some small some not so small. The biggest change has been the way I think about the situation. Asthma was starting to take over but I realised that I can’t let the condition rule my life. I’m trying to learn the high level of resilience that I read of in this forum from other sufferers who are in a much much worse position than I am.
My question is: What changes have you made when your asthma has cruelly taken a turn for the worse?
Thank You, JC
Written by
Junglechicken
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I don't think it's something I did consciously but accepting it for what it is (not in a "well it's never going to change" way but in a "not being angry at it" way). People have often said "oh you're so positive, it must be so hard..." and so on. They're right but I suppose I'm used to it being this way and accepting it has helped me not dwell on it. But as I say, I don't think I did that consciously.
I’m sort of doing similar by trying to put back some of the weight I lost. I actually find exercise is one of my triggers, so I’m trying to workout a way to deal with that.
When I first started running about 4 months ago, I could only go about 1 minute before being puffed out and now I can run 5k with no stops. Not very fast tho but it's getting there. I take the fostair 200,6. Think the steroids in it are the biggest help been on that for about 5 months now. Glad winters hear and not looking forward to next summer
Though I am moderate I feel it has had a major impact. The first, and most significant, was that I either didn’t notice when I had warning signs or ignored them if I did. Thus I ended up being significantly unwell for several months, and it ended with a hospital stay. So I have really worked on becoming more aware, and not ignoring what my body is trying to tell me. Next get to know triggers. Infections is by far the worst, then cold air (big one at the moment) things burning, ranging from wood burners to food cooking, scents etc. Then learning how to manage that to both help myself, but also respecting the part of me that does not want to make a fuss. Etc, etc, etc. Yes, it feels kind of constant. But I am vastly better off than many people on here! And much better at managing it.
Yes, I’ve now fallen into the moderate asthma category. I’m trying to remember how I used to react as a child to my asthma but I struggle to remember much about it. I rely on what my mum and dad have told me about my attacks. I think I must have just bounced right back! I’m working on having that mental attitude again.
My asthma has gone from moderate to severe in the last year or so and the one change I am determined to make going forward is owning my condition, admitting when I need to take a step back and letting friends, family and my employer know that I'm not superwoman 😊. I think because I've been asthmatic since childhood I've always tried to be 'normal' and brush my illness under the carpet. Not any more! I'm also reducing my hours at work so I can rest more. I'm feeling better mentally already 😀
I have made lots of changes to my life since being diagnosed 15 years ago. The latest one was having to sell our beautiful old home. We lived in a 3 story listed building with open fires and log burners. We had spent years restoring it and had intended to live there til we were old. However it became too much for me and we moved into a brand new bungalow this year. It was heart breaking. But its small, warm and easy to maintain. It was the hardest sacrifice I've had to make due to my illness. Other things we have done are things like buying an ajustable bed to help me sleep and a second car so that I dont get cold walking to work anymore. I miss walking to work but its not possible in the winter. On top of all of this is just trying to take better care of myself and accepting that life is different now. I dont really make plans in the winter and spend my time either at work or at home. I used to have a hetic social life but now I find I'm so unreliable that prefer to say no to events rather than cancel last minute. Having the support of my husband, family and friends is priceless. They are all so supportive and understanding. Im really very lucky because I know not everyone has as much support as I do.
I can’t imagine how that must have felt. Just the worse feeling in the world to have to leave a home that you love. My mum lived in a beautiful country village for 14 years. I adored going to stay so relaxed and away from the city. It helped my anxiety so much. Sadly due to ill health and other circumstances she had to come back to the big city to live. Means she’s closer to me but I do miss the little cottage. She misses it too I think.
We've been on a lot of the same posts comparing notes this year so I think you know that I really empathize and am in the same boat.
I was diagnosed with allergic asthma when I was 8. In my childhod / early 20s I probably went into urgent care 6-8 times to get nebulizer treatments from flare ups. My asthma was mostly under control between allergy shots, antihistamines, and inhalers. In my late 20s my asthma got a lot worse and I started to react to things as small as cat and dog fur on people's clothes (I can't even so much as set an eyelash in a house with a pet or I will be in the urgent care within the hour).
In the last three years, I've been on steroids several times and I was on so many courses this past year that I had an adrenal crisis and have since suffered from adrenal insufficiency on top of my severe asthma (blech, not fun). My life has started to feel really out of control at times--I'm on Xolair, Symbicort, Spiriva, Zyrtec, hydrocortisone, vitamins etc. so I feel filled to the gills with meds and I'm constantly anxious I'm going to encounter some kind of unexpected trigger and fall into another miserable, frightening, many-week flare.
My biggest lifestyle changes have been:
* to start working from home
* to have really strict boundaries around not letting people come over who have pets because the dander on their shoes and clothes etc. is enough to set me off at this point--it's been a really hard change because I can't go to their houses either so we can really only meet in public (I've had to get over my anxiety about people thinking I'm nuts for having those rules)
* to put away as much in the house as possible so there is minimal clutter--we recently got bookshelves with doors which has helped a surprising amount
* to run two air purifiers constantly and use a HEPA vacuum a few times a month
* to get a lot more rest and sleep than I usually do
* to see my doctors pretty constantly and get regular bloodwork because of my adrenal issues
I am trying hard to focus on what I CAN do, not what I CAN'T do (my anxious mind tends to ruminate on the latter).
It basically translates to--I can't go over to people's houses who have pets / have people over who have pets / stay at pet-friendly hotels and I can't travel to remote places with poor medical care [after an asthma scare on a boat to Russia this last year I realized I was being unrealistic in some of my travel goals]. But I can do everything else!!!! That is a liberating feeling when I think about it that way
This a great book on grieving your "lost" life due to chronic illness that helped me quite a bit this year:
Thank you Hilary. That was a very honest and heart felt reply. I’ll have a look at that book link as it does seem to be something I could benefit from. My confidence is slowly coming back as I now think. One: It’s definitely your asthma causing problems (specialist said so) knowing what is causing the problem is a step towards dealing with it. Two: you have always managed to control the attacks with your salbutamol and if I can’t then my A and E is only 10mins away. Three: you know that anxiety is a major trigger for you so your learning to control that. Four (and most importantly) you are mentally strong, just reflect on what you’ve been through right through your life and what you’ve achieved in so many ways. Lots of positive thoughts there I think. I do have another chronic condition (not related to asthma in any way) that I battled with right through my teens and early 20’s. I’ve now got an excellent treatment plan and it doesn’t cause any problems at all. I’ll get my asthma there too.
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