The first cut of the year….

Kai 17th May 2017

Yesterday my garden go its first cut of the year. That to me is the first step towards summer. When the snow has been gone long enough that the grass is long enough to need cutting.

I’m fortunate in that a teenage neighbour cuts my grass for me, as needed, each summer. He earns some money and I don’t have to manage the equipment which in the past, has been known to shred my hands as I didn’t feel how badly the vibration was blistering my palms.

The only time I’ve enjoyed cutting the grass was the year I lived on a small-holding and we have a ride-on lawn mower. Then I was quite happy to cut the grass!!

Maybe that’s what I’ll invest in when my teenage neighbour grows up and leaves home; a little ride-on mower so that I can do my own grass.

Anyway, Kai and Molly loved the cut grass and brought lots in on their paws for me to see for myself!!

The theory is that by not raking and bagging the cut grass mulches back into the ground and helps the bald patches cover back over with grass once more. I’ll just have to see if it works!

At least we got this cut in between the thunderstorms!!

What’s the first thing that signals the beginning of summer for you?

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.

If it’s not dog poop, it’s mud! Spring seems to be here….

This is my back garden right now. Though you should replace the toddlers with an elderly female shepherd/husky mix and an 18 month standard poodle. They seem to love the mud just the same.

So trips outside now include wiping 8 paws! Which usually means that one dog spreads as much mud around the floors as they possibly can while I wipe the other dog’s paws. Then the first dog gets in the way of the second dog having their paws wiped as they’re jealous of the attention. It’s an experience!

It’s a good job I’m working from home and nobody can see me from the waist down on any of the WebEx meetings that I attend. I’m usually covered in mud too by the time all 8 paws are wiped off.

BIzarrely both dogs are trained to wipe their feet but neither seem to be able to remember the concept! At least most of the time it’s just the floor which wipes clean pretty easily.

Then last night I got quite the surprise. Rather than making my bed yesterday I’d pulled all the covers back to air out the bedding. Apparently at some point I forgot to shut the bedroom door for in a perfectly straight line, right across my king size bed, were two lines of 4 prints. It almost seems a shame to wash the sheets they did such a great job of getting such perfect prints!

I will be glad when this specific part of spring is done with and the flowers start to come up and I can let the dogs out without being ready for the mud tussle on their return!!

Oh, and I’m still battling the spring poop…. but I think it’s winning 🙁

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 🙁

 

Accept what is…

It’s amazing how quickly we forget just how bad something was and get frustrated with not improving as quickly as we’d like.

A number of people have asked me recently about my progress at respiratory rehab. and with my transitional return to work. Instead of focusing on how much I have improved and the positive aspects of being back at work I have found myself expressing my frustration instead.

How quickly I forget that just a few months ago I couldn’t breathe moment by moment. I couldn’t walk to my own bathroom without getting totally out of breath. I fought for every breath day after day.

Yet, just three weeks into a ten week rehab program I’m frustrated that I still can’t walk on an incline at all. I don’t really account for the fact that I was able to go for a walk outside to begin with which is how I found out that while I’m doing pretty well on the flat, an incline is still too much for me.

I’m actually now able to walk for 20 minutes at a time, on an indoor track slowly, without getting totally out of breath and my recovery time is night and day to when I first started.

Likewise, rather than focusing on what I have achieved in my one day a week, working from home, I found myself thinking of what I hadn’t been able to do.

It’s time for some radical acceptance. For those of you have taken Dialectical Behavioral Therapy (DBT) the concept will be familiar. Radical acceptance is about not judging, accepting what is without necessarily supporting or condoning it and just enjoy the moment for what it is.

So I am accepting the facts that:

  • I can’t do as much as I want to be able to, but I’m doing far more than I could have even imagined not too long ago
  • I have achieved an enormous amount, both in rehab and in work, very quickly
  • It will take time to recover, and I may never make it back to where I was, and that’s OK

I can’t say that accepting what is and letting go of what was is easy. I do know that my life is easier when I do it though.

As for believing in what will be; there I still struggle. Some days I feel pretty hopeless when I’m ‘grounded’ by something as simple as walking past somebody wearing perfume on my way back to my car from rehab. Or when a late night wipes me out for days and days.

Then I have the moments where I do walk for 20 minutes at rehab. and can see a future where I’ll be able to get out and walk again for an hour or more. Those are the moments that I need to hold on to more often. The positive and the hopeful.

To believe in what will be is to accept that what will be is unlikely to be what was and that’s OK. The future is unknown and for somebody who likes control and structure that’s pretty terrifying.

The answer is to really practice mindfulness, and to live in this moment. In this moment I’m doing OK. I’m breathing, I’m able to walk, I’m able to rest, I’m able to work even in a limited fashion. Life is a lot better than it was a few short months ago and it will get better still.

I’m not quite at the point of saying that life is good but it is OK, and there are definitely good moments. That in itself is a huge step forwards and one I need to remind myself of!

 

 

Why labels, and getting the right labels, are important for some disabled people

I’ve always wondered what life would have been like if I had been raised as Deaf rather than mainstreamed with occasional accommodations for my “hearing loss” that were often more an afterthought than an actual accommodation.

More recently, as I’ve struggled so much with my health getting the right label has been of the utmost importance. Without a label at all, everything was a great deal harder. “Breathing difficulties’ sounds so innocuous.

Unfortunately what seems to be the right label, that of Reactive Airways Dysfunction Syndrome (RADS) and Hypersensitivity seem to be very much misunderstood.

However, knowing that that is what’s wrong with me personally has allowed me to push myself in respiratory rehab. much more than I would have done before I knew for sure. Until we’d ruled out a lot of other possibilities I was always scared to do much of anything just in case I made anything worse.

Fighting to breathe for over 6 months before gaining any relief was hard enough. I wasn’t willing to do anything that could make that come back or get any worse. I was already past the point at which I should have been hospitalised months ago. Thankfully, I did get relief with the help of an outstanding speech language pathologist and the continued support of my medical team of specialists and my GP.

However, today I read the best description I’ve ever read on why, as a disabled person, being labelled matters to me.

Sparrows and Penguins

I don’t know if it’s true for all disabled people, but for some of we often do identify by our disability rather than as a person with a disability. I’m not a woman who happens to be deaf. I am a deaf woman. Being deaf permeates every aspect of my life. It is core to my identity.

So like “Candidly Autistic” I’m proud to be a penguin. I might be a different kind of penguin than “Candidly Autistic” but there is relief in no longer trying to be a sparrow.