Fibromyalga…

A few years ago I went down to southern Ontario to see a specialist about my Osteogenesis imperfecta. Whilst agreeing that I am atypical for my OI, in that I’m tall and most people with OI are short he also added a new diagnosis to my collection: fibromyalgia.

The new diagnosis answered a lot of questions for me as it explains a great number of my symptoms as depicted in the graphic for this Blog. However, treatment for fibromyalgia remains conflicted. Over the counter painkillers, antidepressants and anti-seizure drugs have all been shown to benefit some patients; especially, when combined with physical therapy, occupational therapy and/or counselling.

Unfortunately the weather seems to really affect fibromyalgia symptoms. Cold, damp days and drops in barometric pressure are widely associated with flare-ups in symptoms of the condition, which affects mostly women. Rapid changes in temperature can be problematic too.

On my worst days I feel as so I’m a hundred years old and every bone, joint and muscle hurts. On good days the pain is just there, underlying everything else going on with my health but not front and centre for a change.

So I wish our current weather would make up its mind. We’ve had some really hot days, too hot for me to even go outside as I burn so easily. Then we’ve had the cold, damp days as well. My body can’t seem to decide how to cope with this so my fibromyalgia flares despite the warmth due to the rapid changes in temperature.

Fibromyalgia is much more common than you might think. Recent studies suggest that it affects between 3-6% of the world’s population with 75-90% of those people being women.

To date, the cause of fibromyalgia remains unknown. Genetic studies are being conducted to see if genetics has a part to play. In many cases fibromyalgia is triggered by an accident or trauma of some sort. In other cases there seems to be no rhyme or reason as to why one person gets it and others don’t. It will be interesting to see the results of the ongoing research in this area over the coming years.

In the meantime, I apologise to those of you that I have had to cancel plans with due to a flare, or lack of spoons, and very much appreciate your understanding. With luck, we’ll see effective treatment within my lifetime!

To seasonal camp or travel…

So, as some of you may remember, I bought a new little travel trailer back in September 2018. I say new, but it was made in 1972. So it’s just a year younger than I am. However, it’s in great shape and I had it completely re-wired, last year, before it went into storage for the winter.

Now that the new season is almost upon us (it starts the May long weekend) I have a decision to make. In the past I’ve always travelled with my trailer. I took my previous Boler to Prince Edward Island through Canada and to Rhode Island through the USA on different trips.

Last year I camped with my new trailer in Sturgeon Falls for the long weekend after buying it in North Bay. I like camping and I like travelling so it seems like I just need to decide where to travel to this summer.

So that was my original plan. I booked a shake-down camp in St Ignace the week following the long weekend in May and started planning a much longer trip to meet friends at their seasonal site in Alberta. But then I saw a posting by the Busy Beaver Campground on St Joseph’s Island just 45 minutes away. They have a few seasonal sites available. So yesterday I went out to see them for myself.

Two of the three sites wouldn’t work for me. One was very exposed and my fibreglass trailer would just become an oven without any shade. It had a great view of the water though! The second was tucked in between two other larger trailers. It had shade and a great view but I have two dogs and one of the big trailers had little children. I could see me spending my whole summer trying to get them to leave the dogs alone. It would also have been very difficult to enjoy if I didn’t get on with the owners of the two big trailers as I’d have to walk between their sites to get anywhere.

That brings me to the third. Which is tucked into the trees so it gets plenty of shade. It doesn’t have a perfect view but it’s not bad either and it’s less than a minute’s walk to get a better view. So I’m debating what to do…

Fortunately, Steve & Lorraine (owners and managers of the Busy Beaver Campground) don’t know for sure yet that the third site is available so I have some time to think. Do I want to try a year of seasonal camping in the same place?

On one level it appeals a great deal. Much as I love travelling it is a hassle to make and break camp every day or two. I love the idea of being able to leave clothes, things to do and some food there week to week.

It could be nice to be next to the same group of campers all summer. Though that could be bad too if we don’t get along! But I’m not too concerned with that as I can usually get along with most people and the campsite is strict about campers being quiet at night-time.

Not having a bathroom in my trailer the bathrooms on site were important to see and they are great. Newly renovated and exceptionally clean. They’re also accessed with a key so only campers on site can use them.

The good news is that the campsite doesn’t have WIFI. The bad news is that the campsite doesn’t have WIFI. Thankfully, I did have cell coverage by the office at least. I forgot to check at the actual campsites. So I wouldn’t be out of touch completely.

Given that I plan to spend most of my summer conducting a systematic review which entails a great deal of reading this could work out perfectly. Little distractions and plenty of time to work on my research. I just have to remember to make sure that I have copies of papers on my laptop itself and not just on my G drive.

So, assuming the site that I want is available I have to decide do I want to seasonal camp?

The maths is pretty simple. It works out that I need to spend 7-9 nights a month at the campsite to simply break even on what the cost of nightly camps would have been. If I am there more than that I gain.

Additionally, if I want to stay for next year I can store my trailer on the site and not have to move it. That appeals too and would save the storage fee that I’m currently paying.

Given my disabilities a seasonal site may be the safer option for me as well.

So it all comes down to the fact that I have to decide if I’m ready to have my wings clipped or not.

I’ll let you know what I decide…

Invisible disabilities… Thank you Sault Ste. Marie…

I saw a new doctor this morning and as part of their intake I had to provide a list of my medical conditions. I started listing them but the nurse and I got stuck spelling the first of them, Osteogenesis Imperfecta, so I pulled up my medical ID on my phone. 18 conditions later they then made the ‘mistake’ of asking about my allergies. 13 allergies, including several anaphylaxis, later we were done. Thankfully, I’d actually thought to take a list of my current medications with me so I simply gave them the list rather than listing all 14.

As you can imagine going through that little lot gave me pause to think. Not one of my conditions is visible or readily apparent. My use of a service dog does mean that I’m disabled but other than that clue you would never know that I was invisibly disabled, let alone the extent of it.

Being a member of several service dog groups on Facebook I’m aware of a number of handlers that have access issues because ‘they don’t look disabled’ or ‘they’re too young to be disabled’. I guess at 47 that I don’t fit that last one anymore. However, I certainly fit the first.

Despite this, I’ve never had an access issue. Once, when staying in a hotel in the USA I was asked the two questions allowed by the ADA. But otherwise I’ve never even been asked for the doctor’s letter that I must carry with me in Ontario.

So I just wanted to thank the people in my town of Sault Ste Marie. Thank you for treating me as I wish to be treated. That is, just like everybody else.

Despite my long list of invisible disabilities people treat me as me, even with a service dog. Thank you!

Fake disabilities… Fake service dogs…

I’ve written before about the issue of certification for service dogs in Canada and how discriminatory some provinces are for service dogs and their handlers. However, there is a growing problem across Canada in terms of people faking disabilities in order to take their pet dog out in public.

Actually I doubt that they realise that that’s what they’re doing. However, if you take a pet dog out in public and call it a service dog when you’re not disabled to a point that a service dog mitigates your disability then you are faking a disability.

To have a service dog in Ontario a medical professional must have written you a letter, that you must carry with you, that states that you need a service dog to mitigate your disability. Without that letter a dog, no matter how well behaved, is a fake service dog.

Why is this such an issue? Well it takes about 2 years to fully train a service dog and training continues throughout its working life. Service dogs are trained to cope with a huge variety of situations and scenarios. Throughout all they are required to be calm, quiet and do their job.

Pet dogs are not trained to the levels that a service dog is. Even extremely well trained dogs, such as a police dog, is not expected to behave as calmly as a service dog is.

So when you bring your pet dog out in public and come across a legitimate service dog team the majority of pet dogs will misbehave. They’ll bark, lunge, try to ‘say hello’ to the service dog and in some cases even attack the service dog. I know of several teams whose service dogs have been attacked and the dog had to be retired from service work as a consequence. Leaving that handler isolated and bereft.

Additionally, people take their pet dogs out in public and they are way beyond their comfort level so they misbehave. That puts the next service dog team at risk of being refused public access due to the first dogs behaviour. It’s not right and shouldn’t happen, but it does.

Emotional Support Animals (ESAs) are an American concept and is needed to allow pets in non pet friendly housing. They do not exist in Canada, aside from in Calgary by-laws for livestock! With that exception either your dog is a full service dog or it’s not.

If it’s not then please realise that when you take your pet dog out in public and call it a service dog that you are really faking a disability.

To be totally honest having a service dog is hard work. It’s not something many people would choose unless they’ve tried everything else first. It’s like having a permanent toddler. Everywhere I go I have to think about my dog’s safety and what tools, such as boots or ear protection, I might need.

Additionally, I have to be ready to deal with the people who try and interact with my dog when it’s working despite a clearly labelled vest which asks people to ignore the dog. I also have to be ready to listen to everybody’s dead dog story. I have no idea why service dog handlers are expected to listen to such stories but I’m not alone in coming across this. Even if people leave us alone they still point and stare. Working a service dog is not for the faint at heart. A 10 minute trip to the store can become 30-45 minutes easily just dealing with other people.

So let me reiterate: Please stop taking out pet dogs and calling them service dogs. You are discriminating against the disabled in doing so and making the life of legitimate service dogs teams much harder. Please just stop!

Toxic people no longer welcome here…

For the sake of my mental health I have cut out certain people from my life over the past two years. It hasn’t been easy and at times it’s been the hardest thing that I have ever done. However, it is worth it. The decreased stress in my life from no longer having to actively deal with their issues and problems is beyond measure. If you’re not sure what I’m taking about Chelsea Jackson explains well what it means to have, and cut out, a toxic person in your life in her blog “Why it’s OK to cut toxic family members from your life”

So for anybody struggling with this issue let me reassure you that it gets easier with time and is extremely worth it in the end!

To be the best person you can be, means that you must look after yourself first and foremost. If you’re constantly engaging with a toxic person you can never be your best you as they are constanty dragging you down. Stand up for yourself and you will become the better mother, daughter, sister, wife, that you want to be.

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!

 

 

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!