29 November 2017

Living with a Psychiatric Service Dog

I have chronic complex PTSD. I was diagnosed in 2011, out of the blue. I took six months off work, rested, went to therapy, wrote, crafted, and was still staggeringly ill.

I never did go back to work.

I eventually came to get my head more or less wrapped around my diagnosis, but it's really hard: I don't have the typical PTSD triggers, but I certainly have the symptoms - I don't sleep unless sedated, I have an exaggerated startle response, I don't regulate my emotions very well (I can get extremely irritable for no reason, or overreact to simple things, or fall into the Pit of Despair, or be sort of neutral for days on end). I have developed rather noticeable memory and executive function issues: I don't make good decisions, I can't manage the finances and paperwork effectively, and holding focus on any one thing for very long isn't possible anymore, to say nothing of the way I regularly forget what I came into the room for, where I left my glasses, what I need at the grocery store, what we discussed yesterday, or last week, or last month. Yes, everyone is forgetful and distracted sometimes, but I am forgetful and distracted all the time. It's such a dramatic change from the person I used to be that if you knew me before you'd see it plain as day. The thing is, I am not so disabled that I can't pass as a regular, normal, functioning adult ... the troubles are sneaky, low level, and persistent in ways that they aren't in a healthy person.

And this makes me constantly question whether I'm sick or just not trying hard enough.

Surely, if I just put a bit more effort into it, I could concentrate and get the paperwork done.
Surely, if I just tried a little harder, I could keep up with the housework.
Surely, if I just paid a bit more attention, I would remember what people said.
Surely, if I just ate better / exercised more / followed a better routine, I could sleep at night.

Okay, I've given up on the last one. I did try weaning off my night time sedatives, and stayed awake two nights straight and was appallingly out of sorts. The anti nightmare and memory-blocked sleep are critical to my survival, and the meds are essential to my ability to function.

And I know I can't just try harder to make the reactions to some innocuous trigger stop happening: awareness makes a lot of them less powerful, but they are sneaky. I drove home from the doctor's via a different route one day, and was so out of sorts and unsettled the rest of the day ... I finally realized I'd driven past the cancer hospital, site of some seriously unpleasant events. Yeah, I don't take that route anymore. And I know that the mood stabilizer and antidepressant that I take help keep me from the need to self-injure, and put up a safety barrier at the edge of the Cliffs of Insanity so I'm less likely to fall. So yeah, I need those too.

And the meds to buy me a day of concentration (at the price of two days of recovery), and the meds that settle my unsettled nerves.
Plus monthly visits to the psychiatrist and psychologist.

Okay, even I can admit that anyone who needs that much help just to keep going is very sick.

But, it always feels like I'm just not trying hard enough. In reality, that's part of the picture of PTSD - we can't quite accept that what happened to us was a big enough deal to warrant this kind of injury ... we toughed it out, we survived, why shouldn't we just keep going the way we were?

Well. That's the long circular argument that happens in my head all the time, more or less. I know I'm sick, I know I'm disabled ... but I don't feel like I ought to be, because other people have had it worse than me, because what happened to me wasn't all that awful and I must just be a wimp for not being able to suck it up, because surely if I just tried a bit harder I could squeeze more productivity out of my scattered self.

But the truth of the matter is, I need help. I need practical help with managing the household (which I get from my family, bless them), I need lots of time by myself to meander through the kindergarten crafting stations that are my coping strategies. And I need company, at the same time. I need someone to recognize when I'm starting to get frayed around the edges and tell me it's time to go home. I need someone to ground me when my dissociative tendencies kick in. I need someone to tell me it's all okay when I wake screaming from nightmares.

That someone is Ben.

Ben is my service dog. He's five now, and has been working for me for two years. We'll be doing our certification test come the new year.

Ben came to live with us as a pet ... he wasn't meant to be a service dog. But my illness progressed and it became obvious that I was one of the people whose PTSD falls into the "chronic" category. I wasn't going to get better, and I needed to do whatever was necessary to get the most out of the life I've been given, limits and all. I considered acquiring a trained service dog, but I thought that before bringing another dog into the house, we should give Ben the opportunity to volunteer. We started boot camp in December, worked hard on his obedience and public access skills in pet-friendly places for the winter, and by spring, I knew that although I couldn't explain why, having Ben with me made things easier.

And so we began our heavy duty training: we went to West Edmonton Mall on a Saturday. And then I learned more about the standards and training of service dogs, and we worked to the BC public access test standards. And then Alberta got organized and sorted out a certification program, and now we'll be doing that.

And I know that I need Ben. He licks my hands and bunts at my arm if I am out of sorts, demands that I play Toss the Squeaky Monkey or Stuffed Sheep Battles Stuffed Bear at least once every day (which means at least once every day I laugh!), sits on my lap to provide deep pressure therapy (some alchemical magic whereby having a soothing weight on your lap makes your nervous system chill out), sleeps in the small of my back or on my legs and provides convincing proof that I'm awake (or that I'm not - when the Ben in my dreams isn't behaving normally, I often wake myself up, because it's a clue that I'm having a nightmare).

Somehow, having him with me all the time helps me hold my balance better.

Life with a service dog is different. There's a lot more planning and logistics to deal with, particularly if you travel: we are going to Ireland in December and the paperwork for flying with him out of the country is staggering. Hotels sometimes give you grief (we generally book at pet friendly places, or big chains that have 'service dogs are welcome' policies). People ask you for your ID - which our government hasn't even made available for people like me until this past fall (a printed business card with an explanation of psychiatric service dogs usually suffices). Restaurant managers and staff who aren't from around here frequently know the food service rules about 'no pets' but are often unaware of the exceptions for service animals (yet another place those business cards come in handy). People sometimes think you must be training dogs for an organization that places them with disabled people, because you don't look disabled (I have learned to smile and say "he works for me"). Small children shout "PUPPY!" when you walk by (I find this to be a bonus). You overhear conversations about "people with fake service dogs" (I have been known to say, "Some people want to take their dog with them everywhere. I have to take my dog with me everywhere."). You pre-emptively tell the hostess at the restaurant that he's a working dog. You learn to adopt an attitude of "well of course I belong here, he's invisible, we are just doing our thing" ... and have those business cards in easy reach for the inevitable questions about service dogs, and training, and PTSD. You get used to seeing most of the people who walk past you grinning at the cute dog.

You live with nose prints on the inside of the car windows, a dog bed in the passenger seat, paw prints on the console. You live with treats and wet wipes in your purse, business cards in all your pockets, and water bowls in your living room.

You try vest after vest and leash after leash to find the combination of gear that works for you both. You learn to hose off your dog's undercarriage in the shower after every summertime dip in the pond, or a winter run through the slush. You accept that there will be dog hair on everything, even your pillow.

Your family has to get used to the idea that you'll be looked at everywhere you go. It's kind of weird to have a family member who has always seemed to be okay deciding that now they need a dog with them in order to function ... but once they've seen the difference your dog makes, they'll never suggest leaving him at home again.

You have to accept that you are disabled, and that your dog mitigates that disability.
You don't have to explain the mystery of how, just accept that it is.

Ben makes my life better. I can't really tell you how or why, but he does.

Thanks for making us welcome.

11 October 2017

World Mental Health Day

It's #worldmentalhealthday.

As someone disabled by mental injury later in life, I know how important it is for people to have ready access to care. I was able to call my community mental health centre and speak with a counsellor that day. I had to do my own research to find a psychiatrist, but he answered my email enquiry and accepted a referral from my psychologist - who adjusted her fees to ensure I could continue to see her as often as I needed. 

What would I like to see change? 

- Disability benefits shouldn't be so hard to come by. I worked for 20+ years, but because my decline was gradual, CPP isn't available to me, though I've contributed all my adult life. Had I crashed hard and needed admission, they probably would have put me on disability. Because I tried hard for four years to find a way to continue working, even part time, I am considered not to have been *really disabled*. I strongly suspect that if I had say, a seizure disorder that gradually got out of control, it wouldn't be such a challenge. 

- Those of us who do everything we can to stay functional need support to do so. I would like to have access to say, a housekeeping visit once a month, or an accountant to help with the paperwork. I am fortunate to have excellent family and social support, but that's hardly true of everyone - and if my disability were more visible (say I needed physio or crutches or a wheelchair), there would be help available. My illness is just as real even though you can't see it. 

- National prescription coverage. I pay $2 *a day* for the one drug that lets me sleep... Never mind the antidepressant that keeps me alive, the mood stabilizer that counters the mixed states I regularly fall into, the anti nightmare drugs that keep me from waking up screaming, the stimulant that helps me focus, and the marijuana that helps take the edge off the jitters I feel every day. My prescription costs run in the thousands of dollars each year. 

I know I am unwell. My family knows it. My friends know it. I have a service dog who helps keep me balanced. I am disabled by complex chronic PTSD.

But because I'm a civilian who was injured by a messy life, not a first responder or a soldier, because I tried my damndest to do as much as I could, because I look okay and have no xrays or blood tests or brain scans... The programs available to people with disabilities are generally NOT available to me. 

I don't think that's right. 

I am trying my best. This is what coping looks like. Having Someone  Important say "yep you are disabled, here are the programs that could help you" would ease my journey and lighten the load on my family. 

But I'm just a civilian who had a messy life, and if I just took some more meds surely I could hold down a job. So say the powers that be. 

They should have to live a week in my head. 

They'd sign the papers just to end the experience.

09 June 2017


Play is the work of childhood.

Craft is the work of healing. 


20 January 2017

Ireland 2018 ... All in!

We love being in Ireland. It's green (oh, so green), there's water, waves, old stone buildings, castles, amazing food, excellent beer and whiskey and cider, friendly people, and history everywhere you look.

In 2018 The Reluctant Farmer and I will have been married 10 years (Amazing! He's still with me after all we've been through! What a guy.) and we figured a trip to Ireland was a completely reasonable way to celebrate. What we'd really like is to share Ireland with our kids - so the plan is that in the spring of 2018, The Reluctant Farmer and I will fly over and then the kids (who will be 14, 16, and 21) will join us for one week partway through our longer stay. It's gonna be awesome.

After last year's trip, we did realize that Ben's work supporting me is more essential than I had believed. While we had a fantastic time, I was not as well as I would like, and my husband's opinion is that I'd have been much better with Ben along - and he knows my symptom fluctuations better than I do, because part of PTSD is being a bit clueless about your own internal condition, and after six years my husband has figured out what "headed downhill" looks like.

So ... research on taking dogs to Ireland.

The regulations for bringing a dog in aren't that onerous - microchip, proof of vaccination, deworming treatment just before we travel. We can do all that. Only certain airlines can bring animals into the country, and each airline makes it's own policy decisions on service animals in the cabin.

We'd like to fly Aer Lingus, from Toronto to Dublin (we will get from here to Toronto with WestJet, who are very welcoming of service animals, so that part is no problem, and it's a domestic flight, so simple). I wrote to them to ask about travel arrangements:

 We are planning our third trip to Ireland and planning to travel with Aer Lingus again!
 I am writing to you for assistance with a disability: I have PTSD and my dog Ben assists me with me with managing my illness (primarily with nightmares, but he also eases my hypervigilance, particularly in busy places). We left Ben at home on our trip to Ireland last fall, as I didn’t feel that he and I were ready to tackle international travel yet, and although I enjoyed myself greatly, I plan to bring Ben along on our next trip as I am so much healthier when he is there to look after me. My husband takes good care of me, but there’s nothing quite like having your canine partner at your side, especially as some of the medications I use aren’t legal in Ireland so I’m already working at a bit of a disadvantage.
 I have checked the regulations on bringing dogs into Ireland and we can readily meet the import requirements, and I understand that it is up to each airline to determine policy on the transportation of service dogs. I see from your (very informative) website that you require ADI or IGDF certification … the problem is that we are currently unable to get either in the province where I live.
 I totally understand the problem of people just putting a vest on a dog and calling it a service animal, and I respect your need to see some form of documentation. I wish we had something available, but so far, there’s no ADI programs locally that will take on civilians with PTSD, and no other formal structure here … yet. Canada is currently in the midst of creating service dog standards but those are a year out, and provincial certification programs will show up some time after that … too late for our planned trip.
 We do have plenty of time to get things organized as we are not planning to travel until March of next year (2018), so I’m contacting you now in the hopes that we can find some alternative form of certification or documentation that will allow Ben to travel with me. We would be happy to do the ADI public access test with a local dog trainer, or get a letter from … my vet? my psychiatrist? Someone else you can suggest? All of the above? J Ben is small – he is a Shi Tzu Poodle cross, about 20 lbs, and he will sit quietly at my feet during travel (he’ll fit in the space between the seats, and will stay put from the time we get on until we disembark – he can stay with my husband when I get up to use the loo).
 Again, I appreciate the need for your regulations and I hope that we can find a means to meet your requirements and still allow Ben to come along. J Thank you so much for your help.
And today, I have a response!

Dear Mrs. Cunningham,

This letter serves to confirm Aer Lingus will be happy to accept your Emotional Support Dog to accompany you in the cabin of the aircraft provided all conditions set out by the Department of Agriculture, Food and Marine in Ireland are met prior to travel commencing.
The Department of Agriculture is reachable by telephone 011-353-1-607-2827 or via email at livetrade@agriculture.gov.ie. Once you have been in contact with the Department of Agriculture, I would appreciate if you would provide Aer Lingus with confirmation from the Department of Agriculture indicating arrangements are in place for them to meet you on arrival of your flight.
Additionally, as you are traveling with an Emotional Support Dog, please ensure you have in your possession current documentation from a licensed mental health professional stating the requirement for you to be accompanied by your Emotional Support Dog in the cabin.
Again, my sincere apology. I hope despite the difficulties encountered on this occasion, you will afford us the opportunity to welcome you on board for a more enjoyable and trouble free experience in the future.
GeraldineGuest Relations Executive 

Canada doesn't actually have Emotional Support Dogs as a 'thing' but hey, the message was clear - Ben is welcome on Aer Lingus!

This is fantastic news.

On to the planning!

04 January 2017

instant pot ... yup

It's a thing. A super popular thing. And for good reason. 

Tonight's win:

- put 2 c water in the instant pot, then the trivet, then the small Corning Ware dish
- cut up whatever veggies and sausage or leftover meat is on hand, dump in Corning Ware 
- crack 6-8 eggs into the blender, add 1/2 c milk and blend 
- pour over veggies and meat
- seal and put instant pot on manual for 20 min

Half an hour later, eat supper. 

Add salad and more sausage if you want.