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!

 

 

Is everything possible or are there realistic limitations?

I participated in an interesting conversation today about whether or not everything really is possible, or if we would do better to accept our limitations. The original point being made is that while we tend to blame others for our own lack of growth, we tend to be the only thing standing in our way.

However, as a person with disabilities I wonder how realistic it is to say that everything is possible. When I mentioned this the Special Olympics were brought up as a model of how disabilities are not limitations, and how they inspire the non-disabled to push past the limitations they place on themselves. I’ve commented before on the issue of ‘inspiration porn‘ and how offensive that can be.

An example was then given of a recent video somebody had seen about a woman with cerebral palsy who was determined that she would walk. She was working with a personal trainer on her upper body strength to enable her to do so.

My issue with this example is that I’d like to know why she wanted to much to be able to walk. Was it her desire? Her intent? Or was she trying to fulfill the desires of others? The wish to be ‘normal’?

For many wheelchair users, a wheelchair becomes an extension of their body and represents freedom and independence. The only limitations being the physical ones of the built environment and thoughtlessness.

Dr. Stephen Hawking has been quoted as saying “Obviously, because of my disability, I need assistance. But I have always tried to overcome the limitations of my condition and lead as full a life as possible. I have traveled the world, from the Antarctic to zero gravity. (Pause.) Perhaps one day I will go into space.”

For somebody with his finances and reputation I suspect that it is much easier to overcome those limitations than it is for John Doe who also has ALS but lives on disability and is not well-known.

So is it fair to be hopeful that all things are possible or should we accept our limitations?

I’m not sure.

I think that if we truly believe that anything is possible that that’s when we do achieve the impossible. That we do place limitations on our selves that aren’t real or needed.

However, if I lived in the hope that all is possible would I deal with the reality of my today or would I always be living for “if” and “when”?

I think that ultimately I have to accept that today I have limitations. They may not be the same tomorrow or next year. There are things I may be able to do to change those limitations but realistically if I refuse to accept my current limitations I literally place my life at risk.

Somehow I have to find the balance between living with the hope that one day I won’t be as restricted and limited as I am now in what I can do due to allergies and hypersensitivity and also accepting those same limitations today.

Is everything possible? Yes, but maybe not today.

When you don’t know what to say, say that; don’t just say nothing!

One of the things that I’ve noticed over the last year is that people seem to have a real problem with not knowing what to say when somebody is in an extreme situation. Rather than say the wrong thing, they say nothing at all.

I assume that it’s a variation on the old adage that if you have nothing nice to say, don’t say anything at all. However, as the recipient of a lot of silence over the past year, from people I’d previously thought of as friends I’d have to say that it hurts.

As I start to re-enter the world a little, even heavily mediated by technology, I’m finding that many people just didn’t know what to say when they heard about my precarious health. So while they were thinking about me, and concerned; willing to help where possible, they still just said nothing.

So from my perspective, they didn’t care. They weren’t interested in me or what was happening to me. Their own life and situation was much more important than taking a few seconds to drop me an email now and then. It hurt.

So for what it’s worth – if you know somebody in a difficult situation and you don’t know what to say to somebody in response, may I suggest that you say just that.

Let them know that you are thinking of them. That you care.

By being silent you’re making a statement. It feels as so you don’t care enough to make an effort to say anything, even the wrong thing.

When people are in extreme situations; especially one like mine which is extremely isolating please take the time to just say hello now and then. It takes next to no time for you to do but means the world to those fighting such health battles.

There is one caveat to this recommendation of course. If you’ve been asked to not contact the person, that’s a different issue. In that case I strongly suggest that you do do as asked. People don’t ask for no contact with others lightly. Disrespecting such a request is incredibly arrogant and narcissistic.

I believe that people know what they can handle and what they can’t. Unless you’ve been asked not to contact somebody in a difficult situation… take a moment, let them know that you care.

Success at achieving some of my bucket list items!!

In the past couple of weeks I have managed to achieve several items on my bucket list and I’m so excited that I just had to write about it again, without adding new items just yet.

You might remember that my list is currently up to 20 items with some having been italicized to mark them as in progress the last time that I reviewed the list.

  1. At least once a month, taking appropriate precautions, get out and do something social
  2. To be a bridesmaid
  3. To visit New Zealand
  4. To live on the ocean
  5. To own a Class B motor-home (Roadtrek ideally)
  6. Waist length hair
  7. Day-trip to Frankenmuth & Bronners
  8. Reschedule & enjoy my belated 45th birthday vacation
  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
  11. year-long road trip following 70 degree (21 C) weather throughout the contiguous United States.
  12. Lose steroid weight and return to a healthy weight
  13. Get out walking, locally and a little further afield on walking trails and then snowshoeing as determined by the weather
  14. Visit Harrison Hot Springs in BC
  15. Go indoor skydiving
  16. Attend the Albuquerque International Balloon Festival
  17. Go on a picnic
  18. At least once a day, do something creative
  19. Resume dress-making
  20. Train Kai in Rally Obedience

Firstly, I’ve kept up with my aim of doing something social once a month, and with the help of the public library, their scent free policy and an extremely helpful librarian and other book club members, I was able to attend a book club meeting! That’s #1 on my list met for this month.

My hair hasn’t reached my waist yet but it is significantly longer than it was – if I straighten it – marking progress towards item #6. I also think that if I was 5′ something, instead of almost 6′ tall, that it would be waist length on almost anybody else!!! Though that would be cheating!!

I’ve pretty much come to terms with my RADS diagnosis though I’m still frustrated by the limitations especially as I have finally made it back to work admittedly in a very restricted fashion. So that’s major progress towards items #9 and 10.

While it wasn’t quite planned, I even managed #17 and had a picnic in my car earlier this week. I’d had a doctor’s appointment at the hospital and only just under two hours later also had a group to attend at the same hospital. Given the extortionate cost of parking I sat in my car for an hour and read my book, having a picnic lunch!

Lastly I got out my sewing machine and whilst I haven’t made a dress yet, I have turned an old T Shirt that I couldn’t bear to throw away into a cushion and I’m part way through a bigger project. #19 can be checked off!

  1. To be a bridesmaid
  2. To visit New Zealand
  3. To live on the ocean
  4. To own a Class B motor-home (Roadtrek ideally)
  5. Day-trip to Frankenmuth & Bronners
  6. Reschedule & enjoy my belated 45th birthday vacation
  7. year-long road trip following 70 degree (21 C) weather throughout the contiguous United States.
  8. Get out walking, locally and a little further afield on walking trails and then snowshoeing as determined by the weather
  9. Visit Harrison Hot Springs in BC
  10. Go indoor skydiving
  11. Attend the Albuquerque International Balloon Festival
  12. Train Kai in Rally Obedience

If I take out all that have been accomplished or had significant progress made, as you can see, a lot has been accomplished in the last couple of weeks. So much so, that I’ll have to start thinking of some new items for my list as 8 of them have now been marked as either “in progress” or “accomplished”. It’s a great feeling!

How’s your list coming along?

 

What a fantastic date to return to work: even in a very limited fashion… International Women’s Day

So today is March 8th, 2017 and the day that I officially start my transition plan to return to work. It’s very limited at this point and I’ll be working from home to accommodate my hypersensitivity and anaphylaxis. But it’s a start.

It’s been almost exactly 10 months since the anaphylaxis reaction that triggered my Reactive Airways Dysfunction (RADS) and all the complications that then ensued. 9 months since I was officially signed off work and 3 months since I was placed on Long Term Disability insurance.

For much of the first 6 months I would never have believed that this day would ever come. I was literally fighting to breathe each and every day. We were discussing second opinions and complex surgery out-of-town. Thankfully, a last straw grasped at turned out to make all the difference and seeing a speech language pathologist and getting off oral steroids helped me turn a corner.

I also finally start the lung rehabilitation program tomorrow. So over the next 10 weeks I will gradually increase my work hours as I complete this program. The hope is that by the end of the rehab program that I’ll have enough stamina to return to full-time hours, most likely still working from home for the foreseeable future.

Unfortunately anaphylaxis reactions don’t tend to get better with time, but rather worse. There’s no way to test it though without exposure which seems a pretty drastic way of finding out if the reaction is still deadly or not so I think I’ll miss out on that option. Especially as minimal exposure even to just citrus scents are triggering extremely severe asthma attacks and hive reactions.

As I mentioned recently, my employer is doing a fantastic job of working with me to work out disability accommodations. Already this week, with the help of the Information Technology (IT) department, we’ve been able to work out how to facilitate my virtually attending some meetings on campus later this week mediated through WebEx.

There remain a number of other issues to resolve but it seems like everybody is committed to working it out. Coincidentally almost all involved in this process are women. From the President of the University to my doctor and many others in between.

So today as a member of the workforce once more I’m delighted to wish you a Happy International Women’s Day.

Further I hope that today, that more boundaries are broken down and that women from all walks of life are celebrated. #she celebrates the spirit of women and their logo is racially and age inclusive however it doesn’t obviously include the disabled woman. Which of course, could be like other aspects of womanhood and invisible on the outside. However, experience suggests that the disabled remain an ignored minority so I ask you to think about all women today, young and old, tall or short, able-bodied of disabled in whatever way and celebrate them all.

For history has shown that it is women that need to empower women, and not to rely on men to do so. Let’s not forget the suffragette movement which worked so hard to give women the right to vote.

Exercise that right. Vote wherever and whenever you can. Your voice counts!

Happy Women’s Day!

When is disability accommodation not accommodation?

In Ontario under Human Rights legislation, and the Accessibility for Ontarians with Disabilities Act (AODA), I can’t be discriminated against due to my disabilities. However, there is this wonderful phrase ‘undue hardship’ that comes into play when requesting disability accommodation.

Recently an Ontario school board declared that it would be an ‘undue hardship’ to accommodate a child’s service dog, in the child’s classroom, that is trained to help the child with their autism. Many people disagree and the case continues.

However, the issue of ‘undue hardship’ is very complex as this case example demonstrates well. The key message in this example that in an employer/employee situation you must engage in the process and the solution may not be perfect, and doesn’t have to be.

I’m currently engaged in this process with my employer and will give them all credit. They have come up with a transition plan that works. It takes into account my limitations (that I can’t be around scents, citrus or latex at all and currently have limited stamina) while also giving everybody time to try to work out a longer term solution to the issues concerned.

In my case my deafness is complicating issues. In most cases, if somebody had to work from home they could teleconference in to meetings and participate in that way. Unfortunately even with my highly amplified phones I still need additional cues – faces. So we’re looking at ways of setting up video conferencing through Skype, or similar, that will be easy to use and low to no cost.

My employer is working hard at accommodating me but the issue of undue hardship is still real. The problem is that it’s poorly defined. Realistically it’s pretty easy to state that expecting an entire university, that also houses a gym with public membership, to go citrus, latex and scent free would be an undue hardship.

Yet some schools do go entirely peanut free to accommodate children with anaphylaxis.

So where is the line drawn?

Is it because my primary allergen (citrus) is so unique and also so prevalent in everything that makes it just unrealistic to accommodate? I’ll admit, I didn’t expect my employer to even try accommodating my anaphylaxis in terms of making the campus safe, having recently seen how hard it was for a hospital to do so.

The next issue is the practicality of accommodation. It’s one thing to say that we can use Skype or similar to video-conference meetings so that I can attend and participate, but doing so is another issue.

I happen to know that this works for me as I use a similar product, WebEx with my colleagues at the Northern Ontario School of Medicine (NOSM) frequently. However, NOSM is a distributed program. They video-conference classes and meetings on a daily basis. It is their way of doing business. So my needing to see faces isn’t an issue; they’re provided for me for the most part anyway. Sometimes I have difficulties with people just teleconferencing in and then it depends on the chair of the meeting. In many cases, they’re excellent and repeat what’s been said for everybody to hear anyway so I can follow the repeat.

So setting aside my employer for a moment, who are doing an incredible job of working with me, my problem comes when I ask for accommodation in other contexts. Not only do I have to explain my disabilities in at least general detail (which I shouldn’t have to), and ask for what I need but often they then expect me to resolve the issue myself.

Let’s be clear – if I could resolve the issue myself I would have already done so. When I found myself unable to talk for those NOSM meetings I contacted a colleague and we texted during the meeting and they voiced my thoughts for me as needed. It was very helpful when they needed a committee vote for example; rather than my having to give apologies.

I think it all comes down to the way that people respond. I’m learning to ask for accommodation, and in fact to even demand it when necessary such as that the majority of my health care providers are now using email to schedule appointments with me rather than insisting on using the telephone. A win!

What’s hard to deal with though is when the request for accommodation isn’t really a hardship; in fact the accommodation takes minimal effort for the person who needs to provide it but they act as so it’s an unbearable amount of extra work.

Those people make my life hard. It’s hard not to feel like a burden when that’s the reaction. It’s hard not to want to just give up and stop fighting. I’m already fighting my own body each and every day. Please don’t make me have to fight you too just to get you to treat me with a little compassion.

So when is disability accommodation not accommodation? When it’s done without compassion and professionalism.

I don’t want or need your pity.

I do need you to listen to me and to work with me. I have solutions, I know what works for me best and what would have least impact on you, or others.

Disability accommodation is not about placing undue hardship on the able, it’s about providing equity and liberation for those already fighting wars you have no idea even exist.

Please remember to be compassionate whenever anybody requests  an accommodation. You have no idea how hard that was for most of us to even ask for!