It’s time for me to identify some new items for my bucket list. If you recall, so far I have 8 items:
- Coffee with a friend in our local Starbucks
- To be a bridesmaid
- To visit New Zealand
- To live on the ocean
- To own a Class B motorhome (Roadtrek ideally)
- Waist length hair
- Day-trip to Frankenmuth & Bronners
- Reschedule & enjoy my belated 45th birthday vacation
Today I just have two items to add. However, they’re pretty big ones in the grand scheme of things.
As of tomorrow, I will have been off work for 3 months. That’s 3 months of living in almost total isolation. I don’t go anywhere aside from medical appointments and very occasional errands.
In that time I’ve had to refuse almost all visitors, as while they mean well, people don’t understand that they have to be totally scent free to come into my home at the moment. That means, no perfume, no scented deodorant, no hairspray, no make-up on their bodies. It means that they can’t have eaten citrus within the last 24 hours or been around smokers or other strongly scented items. Ideally, they need to be in clean clothes that have been washed in low scented/hypoallergenic products.
It’s an awful lot to ask. However, the couple of times that it hasn’t been kept to I have had serious allergic reactions or an asthma attack.
Even only going to medical facilities haven’t been safe for me. Just last week I had an asthmatic response to perfume while waiting to see my respirologist. Another patient came into the waiting room and my lungs reacted instantly. Thankfully, the staff were able to move me away from the exposure and with the help of Ventolin (TM) I was OK.
You may remember that I had an anaphylactic reaction while in the hospital for a biopsy.
So am I being over-cautious?
I don’t think so.
It’s not just that I need to avoid scents.
I simply don’t have the ability to do much of anything and breathe at the same time.
Some days I start to think that I am doing much better, as I’ve had a few days at home in my current extremely low risk sedentary lifestyle. Then I do something as simple as take my trash out for pick-up. My driveway is probably about 25′ long. Last week it took me 15 minutes to bring my trash-cans back in. I had to stop to recover every few steps. It’s not that wheeling the trash-cans is hard. It’s that being in a different air environment unsettles my lungs to begin with. It took me another hour to recover from that activity.
I’ve never been a sporty person but I have always been able to walk. For hours, if I wanted, as long as I didn’t push the pace and used my Ventolin prophylactically (in advance). Now I have days where walking 10′ to my bathroom exhausts me.
What’s really frustrating me is that my doctors haven’t really been able to give me a reason, that I like, for my breathing issues. My test results just keep adding new diagnoses, that need monitoring but don’t identify a cause for the problem.
So much as I hate to accept it, it’s looking like I am going to have to accept the diagnosis of Reactive Airways Dysfunction Syndrome (RADS) muted by my allergist some time ago. Many people confuse RADS with occupational asthma. The reason for this is that it is usually caused by a workplace exposure to chemicals and that it mimics asthma in its symptoms. The difference though is that once you have RADS, attacks can be triggered by anything and they often don’t respond to asthma medications for many people. Neither does it show up on many tests.
In my case, because my initial exposure was to a known allergen for me, citrus, and I also had an asthmatic response to that along with a massive anaphylactic response a diagnosis of RADS wasn’t straight forward. However, I’ve now met the diagnostic criteria for RADS of my shortness of breath going on for well over 3 months with no relief; multiple attacks to things that never triggered me in the past with no relief from my asthma medication – so RADS looks like the winning diagnosis!
There is still a possibility that my breathing issues are due to my Osteogenesis Imperfecta but I like that even less than the RADS diagnosis as that would mean that the collagen in my lungs has deteriorated to the point of causing the breathing issues. That would be worse than RADS as there is no known way to improve it and then this would be permanent. So I’ll take the RADS!
So item #9 on my bucket list is acceptance.
I need to find a way to live with this.
If I’m luck my RADS will alleviate after 6-24 months.
However, it can be permanent.
So my current lifestyle could be the way that I have to live for a long time.
Some people with RADS are able to get out a little more than I am with the use of masks. Unfortunately citrus particles are miniscule and once aerosoled are so fine that all the face masks designed to address allergens etc. still let them through. So masks are not going to help me a great deal, and I don’t want to live in an actual bubble. I also hate having my mouth and nose covered at the same time!
So I need to find a way to balance acceptance and making the most of the life that I have while also still working towards being able to be active in society once more.
I need to get back to work. I miss it. I miss my students. I miss my classes. I even miss my marking!
So item #9 is RADS acceptance and with it comes #10 – return to work!
By pairing these together hopefully I’ll be able to keep them paired in my own mind and actions. I’m not ready to give in and accept that I am no longer able to work yet. However, I also need to stop fighting the diagnosis and accept my current limitations. I have to balance acceptance with also working towards improvement and change.
I can’t control the RADS but I can, and have, do what I can to stay as healthy as I can.
As you may remember, I have started using my Wii Fit every day. I’m now on day 6 and so far have managed to do at least two repetitions of step each day and on most days have managed the guided breathing exercises as well. I’m also doing breathing exercises on and off throughout my day.
What’s been demoralising is that my weight has still been increasing. I’m trying to eat healthily and to watch my portions but it’s very easy to comfort eat in this situation. So I need to work on that too.
However, this is another case where acceptance may be necessary. I’m still on steroids which are notorious for causing weight gain. Though hopefully I can soon get to a point where I can maintain a stable weight if not lose some of the steroid gain.
So here they are: Items # 9 and #10 on my bucket list.
#9 Acceptance of RADS diagnosis and limitations that places on my life
#10 Despite RADS diagnosis, work on improving the quality of my life and work at getting back to work.