Dead canaries…

In the days of heavy coal mining canaries were taken down the pit as early indicators of gas leaks. To put it simply, if there was a leak such as carbon monoxide the canaries would die before the miners giving them a warning and time to get out of the pits immediately.

Sometimes I think that we should now have a modern version of canaries in all public places. Not to detect carbon monoxide but rather the clouds of perfume and cologne that some people drench themselves with.

Our sense of smell is much like our other senses. It acclimates to the smells that are regularly around us so that it can concentrate on smelling things that are of danger to us and out of the ordinary.

Unfortunately, this means that for some people they can no longer smell their favourite perfumes/colognes and so they add more and more until they can smell it again. By which point it’s so intense that those of us with sensitivity to smells have real problems.

Sometimes you can talk to those concerned and they’ll agree to back off the scent a little. Most health related buildings are no scent or low scent areas but not everybody follows the mandate.

So I think we need a modern version of a canary in public spaces. Something that would set off an alert if somebody entered the space with excessive scents. I think that a few embarrassing moments like that and the perpetrators may think a little more before using so much scent again.

In reality this isn’t going to happen but perhaps we can just raise awareness that scents can kill people. As an example, I’m allergic to Marijuana so 420 friendly spaces are literally deadly for me.

So please, as you reach for that perfume or cologne think twice about where you will be going that day and think twice about how much you put on. Those of us with scent sensitivities will thank you.

Why I can no longer fly…

A couple of articles in the past week really hit home for me. Since developing RADS I have severely cut back the amount of travel that I do. In the past I have travelled all over the world and perhaps acted somewhat naively about my safety.

I’ve had one really bad experience on a plane where I reacted to an orange being eaten somewhere on the plane but was able to stabilize myself with medication. Thankfully, much of my travel has been international and as citrus fruits are on the list of prohibited foods for import in most cases I’ve been relatively safe. Additionally, airlines rarely give out fresh fruit.

However, my sensitivity is now much higher than it was. Unfortunately I found out yesterday that, at least to oranges, it remains extremely high. I was in a meeting and as it was breaking up a trolley of food & beverages was brought in for a meeting following ours. There was an orange on the trolley. A colleague notified me immediately and I left straight away thinking that I’d avoided a reaction. The orange was not peeled after all. However, on my way back to my car I suffered from some restricted breathing and had an asthma attack. So apparently, even an unpeeled orange is now an issue for me.

What I am interested to know is how long they were waiting outside the door before coming in. Kai, my service dog, started to be unsettled about 10 minutes before the end of the meeting. I put it down to being a long day as he’d been working since 9am and it was now 4pm. I wonder now if he was trying to tell me about the orange.

Anyway, to cut a long story short I don’t feel that it is safe for me to fly anymore as my allergy is so sensitive and airborne. I sit in wonder when I see people like Miss Allergic Reactor talk about how she travels the world extensively with a severe nut allergy.

In contrast, just this week two boys were taken off a flight due to a nut allergy and the airline being unwilling to accommodate them. I can only imagine what they’d say if I asked for accommodation for citrus fruits especially on a morning flight where they’d usually be serving orange juice with breakfast.

Thankfully, I have travelled a great deal so being restricted to places that I can now drive to isn’t such a big deal. I have all of North America to visit and that’s a lot of places!

Dipping a toe in the water…

In 2016 when I developed Reactive Airways Dysfunction Syndrome (RADS) I was very disheartened to hear that the extreme hypersensitivity would likely last at least two years and could be permanent. Here I am, almost 3 years later and I’m finally willing to dip a toe in the water.

What I mean by this is that I’m willing to take a little more risk with my life and step outside what has become a very restricted comfort zone.

My hypersensitivity seems to have calmed down somewhat. However, there’s no really safe way to prove this as deliberately exposing myself to my known allergens seems like a suicidal option to me.

So I’m now playing a game of risk with my life. It started by really wanting to go to a concert (or three). So I bought my girlfriend tickets for us to attend Terri Clarke who was to perform here in Sault Ste Marie in February 2019.

In the interim I bought season tickets to the Sault Theatre Workshop. I attended their Fall and Christmas performances and had a great time. I’ve since attended another of their shows and will see the last of the season in May.

Given that these went well I was much more relaxed about attending the Terri Clarke concert as it was in the Sault Community Theatre Centre with a very limited cash bar. (Bars are an issue for me as they often have sliced, limes, lemons and oranges to garnish drinks).

So given that I’ve been able to successfully attend these events with just mild hives (held in check by the enormous amounts of antihistamines that I take daily) I’m planning to venture further afield in the next couple of months.

There are several events that I will be attending at the Van Andel Arena in Grand Rapids, Michigan. To be safe I’ve made sure that my travel insurance is up to date and will be attending each with somebody who knows my medical conditions and understands that I may need to leave part way through the performance if my allergic reaction gets to strong. Kai (service dog) will also be with me which helps a great deal. While he’s not trained to scent for my allergens (as they’re too prevalent at very low levels and he’d be alerting all the time) he is trained to react to any changes in my breathing and to alert and lead me away from the source. Thankfully, he can pick up on breathing changes a lot faster than I can. I just have to trust his instincts which have so far been 100% spot on.

So for anybody else with RADS there is light at the end of the tunnel. It might yet prove to be an oncoming train but so far, dipping a toe in the water with all appropriate precautions and plans for dealing with any issues that arise life, for me, is opening up a little once more.

I’ve even booked a campsite for midweek in May to start off my camping season. I’m hopeful that the snow on the ground now may have finally left by then! It’s been a winter of a lot of snow! If that trip goes well I’ll plan others all with my little Boler and dogs.

Sometimes being stubborn is what’s needed…

Sometimes it’s hard not to think that life is out to get me. On Monday, I posted about finally feeling like myself again having had a day out in the form of a road trip on Sunday.

On Monday I had some follow-up tests due to one of those rabbit holes we dropped down when trying to find the cause of my breathing issues, just as a precaution, and the results came in yesterday and they’re not good. So I’m back to that specialist next week.  First appointment after the holiday weekend.

It just seems that for the last year, or two, that every time I start to feel as so I’m getting a handle on life again that something else comes to try to knock me flat.

Well this weeble may have been slow in recovering her equilibrium over the past two years and it might be taking me longer to get back up; but I’m getting back up and will deal with this issue as it comes. I’ll also work hard at not worrying about the unknown and the suspected in the interim.

In reality nothing has changed since Sunday. I had the same issue then, I just didn’t know it. So I’m going to hold on to the good feeling from Sunday and use that to help me through the next few weeks.

I’m on the path to health and while it seems to be an especially twisty path I will get there!

I’m too stubborn not to!

 

 

Just for one day I started to feel like myself again….

Yesterday I felt like myself again, just for a day. It was wonderful. I packed up snacks and emergency survival equipment, loaded up the dogs and hit the road. It was wonderful to feel well enough to just drive….

So Molly, Kai and I went to visit the home of Winnie-the-Pooh, White River, Ontario.

The day was mostly spent driving as it’s a good 4 1/2 hours from Sault Ste. Marie. However, it was a nice sunny day for the most part. Though I drove through two storms on the way home just in time to beat the massive thunderstorm that hit last night.

Some gorgeous views and amazing sights. I saw moose and birds of prey. The lakes were starting to unfreeze so the edges were mixed between waves and open water and icebergs. Some of the waterfalls were just flourishing with the snowmelt.

I loved the sense of humour of whoever was naming some of the lakes. At one point there was ‘Mom Lake’ and ‘Dad Lake’ just next to it. Just as I was wondering what you’d call a third lake I came upon ‘Orphan Lake’ just far enough from Mom and Dad to be orphaned!

It was a lovely day out and the dogs loved the ride and the walk by the Winnie-the-Pooh memorial. Next time we’ll have to go when the museum is actually open and see if I can handle the scents.

However, for right now just getting out for the day was such a huge step for me after almost a year of being mostly housebound. I’m only extending my limits to my vehicle but now that I’m well enough to drive like that again…. it’s wonderful!!

Even with the thunderstorm last night all three of us slept well last night!!

Healing is not linear

I’ve had a few more down days recently which reminded me of something I knew, but had forgotten: healing isn’t linear. It’s not like once you’ve turned a corner it’s a straight line to full recovery. In fact, in this case I’m not likely to ever attain the same level of health that I had before. Anaphylaxis is a life threatening condition that has always been a component of my life but is now a cornerstone of every thought and action.

Whereas before I was sometimes a little careless about my allergies I now know I can’t afford to be, even once. In the past I was able to be present if an orange was peeled as long as I got out fast and self-medicated with additional anti-histamines. I don’t have that luxury any more. Just being in the presence of a citrus scented body wash for less than a minute was enough to trigger a severe asthma attack.

My only solution is avoidance. Unfortunately it’s not that easy to totally avoid citrus as it’s prevalent everywhere. So I also take huge doses of antihistamines carefully timed throughout a day to give me as close to 24 hours cover as we can. This doesn’t stop the reaction but it allows me to get out of my own home occasionally, under careful precautions.

As for my environmental sensitivities, reactions to scents generally… I have a new best friend: a personal air purifier. The one I”m using is the FreshAir Personal Air Purifier by Aerus. I wear this round my neck for my lung rehab and either it’s a very expensive placebo or it’s effective. I’ve been able to be in the same elevator as another lady who I can tell is wearing a heavy scent as I can smell it as she moves past me but stood a few feet apart I’m not being triggered into asthma or reactions. I wouldn’t like to chance it for more than a minute or so but it allows me a little bit more of a normal life.

Though between Kai (my service dog), my Epi pens, inhalers and now this purifier as well as all the medication I’m taking daily it does seem a little insane at times.

Talking of Kai – his natural alerts to my inhaler use is continuing. This isn’t a trained task and I don’t know what he picks up on though he seems to be paying specific attention to my breath. However, I forgot to take my inhaler before rehab. on Tuesday. It’s one that I need to take before exercise. I didn’t make even half a lap before he did a full alert having tried to get my attention more subtly he escalated his alerts to full paws up. At which point I knew I needed to do something but wasn’t quite sure what so I headed back to the rehab. office as I’d been feeling dizzy that day already. As soon as we were there he alerted to my bag. As my other inhaler was in my pocket I now knew what I needed. Took my inhaler and Kai settled just fine.

He really enjoys my off-balance days because he gets to work counter-balance where he pulls a little against a harness in the opposite direction to that which I’m off-balance in. Like most dogs he loves to pull so it’s a fun task for him though apparently its fascinating for others to watch him constantly adjusting his pull to keep me balanced.

Kai is a real superstar! He’s saved my life now more times than I care to imagine.

Anyway, today was a good day on that non-linear progress. The thing to remember of course, that even though there will be bad days I am finally recovering from the depths of where I was and that is something to be thankful for.

Some days recovery is so much slower than I’d like…

So today I decided to start clearing up some of that dog poop. I got myself well prepared with rain boots, heavy-duty plastic waste bags and dozens on bags for picking it up.

It was gross!!

However, the weather was probably perfect for it as I could dig my fingers in the snow around the poop and pick it up often in one slushy piece.

I got all of the side area to the deck done and started on the garden itself.

However, what I didn’t take into account was how hard all that bending down would be physically. I managed about 10 minutes before I was too out of breath to ignore it any more. So I packed up for the day and came in.

Flashback to a repeat of what my life was like for months last year…. It took a good hour for me to recover my breath again. Even after that I couldn’t eat and breath at the same time for a few more hours.

I’m sure it was a combination of the type of exercise, the scents from being outside (though the poop itself hasn’t got to the point of smelling yet – it’s still too frozen) and just doing too much.

It was scary though!

So now,  I’m inside resting and working out how long it will take me to finish off the yard if I just do 5 minutes a day. At least my dogs don’t walk it in. Somehow they pick their way round it!

I’m also looking up different poop scoop devices to see if there’s something that might be easier for me to manage once I’m finished with what’s left in the snow and I’m dealing with the bog that is the majority of my yard currently. If anybody has any recommendations, please let me know!

My apologies for the gross subject matter but hey, this blog is about my life and this was my life today! Dog poop and extreme shortness of breath once more.

The good news is that I did recover and I can breathe again and eat, and talk (to my dogs anyway!). So I am improving but the space between how sick I was and how well I am is much closer than I thought 🙁