Getting through the hard stuff sucks

Getting through the hard times sucks but you can do it

Creating that space for ourselves in our own lives is harder than I could have ever thought. 

What do I mean by that? Well……just that, I have always been told that I am the “strong one” but that has come at a price not a price, a price to myself. 

When someone is always the strong one, taking on things when others need help, fighting through their physical pain to have people see them as being “ok” and fighting for the accessibility of the world around them and their children, and when you end up losing some of your hearing or having a medical situation that is a major impact on your life and you continue to be the ‘strong’ one there is a point where you can no longer be that. You can no longer be that for those you love and more importantly you can no longer be that for yourself. 

Disability has a role to play 

Our mental health is something that is very fragile, and we usually don’t recognize that until it is too late (speaking for myself here). The prevalence of mental health issues in the disability community is extremely high and very prevalent. There are so many more barriers for those who have disabilities and there are stigma and so many other pieces that go along with disability. 

In my experience as someone with a disability I have always found that I need to prove myself and prove that my disability does not stop me whether that be in my personal life as a mother, wife, friend or in my professional life and career. That extra pressure to achieve or to show that disability will not stop me is something that I have been doing for longer than I can remember. But why?

Stigma is real 

The reality is that there is stigma that still exists today around disability, whether it be from what language is appropriate, or the questions and comments about how I could be blind if I looked at them, or I knew exactly where that was so I must be faking it, why can you hear in this situation but not in this one, not being thought of as skilled or knowledgable in things outside of blindness or disability. These are all things that have created this dialogue for me where I don’t want to have anyone think that I am less than because of a disability. 

This along with the extra that life takes when you live with a disability and chronic illness has taken a toll on me and my mental health. I have lost who I once was and now I am on a journey to get to who I am and want to be. Digging out of this will and has been one of the hardest battles I have had to fight, and will continue to be as the days and months and even years go by. 

Some things will never change because well they are just who I am such as speaking up when no one else wants to, having many opinions that I think should be shared (not always), and having the mouth of a sailor and trucker that need to be suppressed, and doing anything in my life with passion and purpose. 

Do it for you 

This road to find who I am again is something that I am scared to embark on but excited to get back to a place where I enjoy life and want to take it on because I am excited and looking forward to it. That has not been the case for more than a year now, I am not living, I am staying home and only going out when necessary, I don’t socialize (friends as a adult and a disabled adult are hard to make), I have spent so many days not wanting to keep going, and not enjoying any part of my life. Even though that is something that is hard to say and put out there on the internet I am sharing because I know how alone I feel and hope if there is even one person who is feeling alone sees this and knows they are not alone. And I hope they read this and know that you can stop being strong and just take time to heal and get back to a life you enjoy.

Being on this journey was not a choice I made and to be honest would rather not be going through but since I am here I will do it for myself first and foremost.

The Cost of Stress

We have all heard people tell us about stress and how it can have affects on your physical health if you don’t keep it in check, I don’t know about you but I really took that advice or insight in the same way I took the advice that you should eat more carrots if you have bad eye sight. If that was the case I should have been orange by the time I was ten, I was not, but I was legally blind!

There are times in our life though that teach us something we never could have learned except for the hard way. This was the case for me in October of 2022. I have not written on this blog since August of 2021, and that is really the start of what the cost of stress was for me.

I was working a lot, travelling, supporting my family, fighting for my son who is on the spectrum in school, dealing with my own chronic illness, pain and facing all the barriers that one does when they are totally blind. People always said to me “I don’t know how you do it all”, and I would just tell them, “I don’t know I just do what needs to be done”. This had always been the way that I coped, I just pushed through.

As someone who has been through depression many times over and continued to battle from as early as the age of eleven or twelve, I started to notice that I was starting to feel myself sinking into a bit of a depression, but in true Ashley fashion, I pushed through. I kept pushing through it all and any new stresses or things that happened until October of 2022.

It was a day that I will remember pieces of for the rest of my life. The cost of stress took me to the emergency room one night, I had awful stomach pain, I was in the ER for many hours and it was determined that I had a cyst that had ruptured because they could see the fluid in my abdomen. I was released and my husband took me home. I was extremely tired, those words do not describe the exhaustion that I felt. When we arrived home I laid on the couch and slept for almost 24 hours and could not wake up for the life of me. My husband was getting concerned because it was getting harder and harder to wake me up and when I would wake up I would make no sense.

Off we went back to the ER. I will share what I remember and fill in with what my husband has told me.. My husband helped me get into a wheel chair in the parking lot (he had to put me in it, I was of no help), I remember asking where we were and he said the hospital and we went into the waiting room. We were sitting at the triage desk and I said I feel funny. Lights out for me! I remember nothing from this point on.

I was hauled off to a room as I had started to have a seizure in the wheel chair, those seizures continued for many days, and landed me in a nightmare. My husband by my side, I was having 18 - 20 seizures a day. Eventually landing me in the ICU. My husband a day or two after me bing in the ICU was put through something I can only imagine having to endure. I was seizing a lot and then he was suddenly pushed out of a room as they called a code blue and there is a team of people rushing in to save my life. He was put in a room and left there for 2 hours not knowing if I was going to survive. This was and is the hardest thing for me to think about to this day.

Eventually the seizures calmed down and they started to lessen day by day, and I was moved to a different ward to continue to recover. It was determined that these were seizures due to stress. Stress !!!!! I was in the hospital still pretty out of it for a few days and eventually came home and had to try to begin the recovery process. I did not remember this nightmare but as my husband began to tell me I was in absolute shock!

I kept having seizures until July of 2022. This is something that I have had to work through and try to manage my stress, to be honest I still really suck at it. I am however much better at recognizing when I am at my breaking point and need to evaluate things.

I want to share my experience so that others can avoid having to endure this nightmare. As someone with a disability I have barriers that I face everyday and challenges that I have to fight to overcome, when you add all of the everyday stress, work stress, the toll fighting for your rights and access, sometimes we need to be honest with ourselves and those around us and say I need help. (I still hate and suck at asking for help but I am trying!)

Until Next Time,

Ashley

Life With Ankylosing Spondylitis (AS)

What is Ankylosing Spondylitis, many of you have seen me post about AS on my instagram page but I don’t think I have ever really gone into depth about what it is and what affect it has on my life. So Ankylosing Spondylitis according to spondylitis.org “is a form of arthritis that primarily affects the spine, although other joints can become involved. It causes inflammation of the spinal joints (vertebrae) that can lead to severe, chronic pain and discomfort. In more advanced cases this inflammation can lead to ankylosis - now bone formation in the spine - causing sections of the spine to fuse in a fixed immobile position.” Read more about it on their website.

There are other joints involved for me; my SI joints (hips) are the most affected. I also have some involvement in my neck, shoulders, hands, ankle, and knees. When I read the definitions of this condition it doesn’t sound so terrible. But the pain that is involved in this condition daily is just unbearable some days. It feels like someone has your body in a vice and keeps cranking on it until you give in; except when you give in, it never stops. There are other things that come with this condition like chronic fatigue, which is more than just being tired. I encourage you to look up chronic fatigue. The other problem with a auto immune condition like AS is that there is generally other auto immune conditions that come along with it like a package deal. That package deal for me is Iritis (arthritis in my iris) which really sucks, inflammatory bowel disease, and psoriatic arthritis. The psoriatic arthritis affects the joints that AS hasn’t yet. I feel like I won the shittiest lottery that was every invented.

The hardest part of conditions like this is that on the outside I look completely healthy, in fact I have recently lost 40 pounds and continue to lose weight and people have commented on how good I look and how healthy I look. But reality is, I have never been sicker. I take a boat load of medications and feel like garbage.

My body determines what I am able o do each and every day, each and every hour. It is a dynamic disability in the sense that there are times where you can hardly walk and I need to use forearm crutches, or get help around the house, days I can’t shower because I can’t stand that long and then there are times when I can go on a 5 km hike and enjoy every minute of it. That for me is the hardest. Because I am someone who likes to be active but my body and brain do not feel the same way.

I can feel trapped in a body that is not made for my brain. My brain wants to go, go, go and enjoy every second of life, has dreams and aspirations and yet my body says NO. In fact lately I have had to really start to think, can I achieve my career goals on this journey that I am on right now. How much more can my body take. The medications all have horrific side effects, yet I need them to continue to walk. The longer we are not able to get this disease under control the more damage that is being done to my spine, my hips and other joints. This disease took what I had left of my vision and has been slowly taking away aspects of my life that I truly want back.

More than anything this disease has taught me that what we see on the outside is definitely not a reflection of what is going on inside someoen’s body. I can look completely normal on the outside and be in excruciating pain and you would never know it because I won’t say anything. I will act as if I am fine. Not because I don’t want people to know but because I have no other choice.

And before I get comments like, go vegan, cut out gluten, drink turmeric tea…….. there is no cure! These are all conditions that I will live with for the rest of my life and cutting out bread and drinking turmeric will not solve the problem, if it was that easy I would be drinking turmeric tea by the damn truck load!

So what is AS, it is a disease I would never wish upon my worst enemy. So be kind to those you see out and about you never know what they have going on inside.

Until Next Time,

Ashley and Danson

Why is discrimination ok for the disabled?

As a disabled woman I have struggled with this idea that the public has no issue with the discrimination that happens to people with disabilities. Even when it is blatant in their face, happening right in front of them. Yet when someone goes online after the event and puts on Facebook or any other social media, or heck even tells the story in person, EVERYONE is so appalled. They will share and share and share and these posts where individuals reiterate the facts of the discrimination and trauma in some cases everyone will read and say how awful and condemn it until the cows come home.

Why am I sitting here today saying that society seems to be ok with the discrimination of disabled people you may be asking? Well that is because every single time I have faced discrimination whether it be with transportation, restaurants, stores, hotels, the bus stop, there are always, and I mean always people around me. In many cases restaurants full of people, stores with tons of shoppers. But yet I stand there alone, tears in my eyes feeling like I am lower than everyone there., not because I am but because I am made to feel that way, trying to explain, educate, and even argue why I have every right to be there like everyone else. And every single time I have been thinking does no one see me? Does no one see how wrong this is? Why will no one say anything? Why will no one help?

I am one person, and when I am standing there being told I am not allowed to shop, dine, or ride, or whatever the reason is because I am a blind woman who uses a guide dog and there are storms of people around but no one is saying anything, the person doing this has all the power. But what would happen if you saw this happen and all of a sudden you had a group of 2, 3, 10 people standing behind you saying “you cannot do that this woman has every right to be here just like us”. I ask you to think about the power that would have.

Not only would that help in some instances and allow myself or others to go on doing what they were with dignity and knowing that they are not alone but it would show these companies and people that we as a society will not stand for discrimination of any kind. The power that would have for the individual who feels so small in that instance, even if it doesn’t go the way it should, would be magnificent. In a world not built for disability knowing that you are not alone would be amazing.

We would all stand up and say something if we saw someone being discriminated against because of race, religion, sexual orientation, etc. I know this because I have seen the videos on social media of people standing up and saying no this is not ok. But did you know that people with visible and invisible disabilities are discriminated against daily for various reasons. Whether that be employment, housing, assistance with shopping, access to public places and so many other reasons. I am not exaggerating this, it happens daily and daily so many stand by and watch it happen and then share the story on social media but left that person stand-ing there alone to fight a battle we are all responsible for.

Imagine standing in a crowded room and someone yelling in your face and the people in the room continue on as if there is nothing going on…….. how would you feel?

Until Next Time

Ashley and Danson

Feeling Bad… Hustle Culture

There has been a huge focus on living a slower more mindful life especially over the last year with COVID and everyone needing to stay home. A great pressure to slow down, take time for self-care, spending time with family and living this new life.

These are all things that work for some, I love the extra time with my family (some days) and I like to make sure I am taking care of myself and my mental health – which is a challenge that so many of us are facing. This idea that this slower, more back to the roots life is what is best for everyone. Is this really the case though?

Hustle culture is almost a swear word these days. The idea that being career driven, being busy with many things on your plate is the worst thing a person can do. Although I happen to disagree. There is something to be said for us all being Individuals and Needing something different. We are not all the same, our brains are not all wired the same. For some a rest in the sun in the hammock, just being is what will fill their cup and help them to be ready to take on the next half of the day or the week ahead. That is great for that person who has figured out that that is what they are needing.

For me, and others that is not the case. i don’t feel like sitting around doing nothing fuels me and fills up my cup. I feel great after I have been able to do something I am passionate about, reading a book while cleaning, studying for an exam (even though I despise Economics), writing a blog post, filming a video, working on rebranding this blog (exciting announcements coming).

Those are the things that fill my cup, I always am made to feel bad because I have too much on my plate, or I am too career driven, I need to slow down. Yes you are right some times I say “yes” to too many things, some days are harder than others, especially when I am feeling like garbage, but what makes me smile, love, and be the best version of me is when I am working towards something I want.

I love my career it is something i have worked damn hard to get and maintain, and I am not where I want to be yet. I will continue to work hard, prioritize my work, prioritize learning more, building skills and working on my side hustle. I think in these times we need to understand that we are all different and we all work and are successful in different ways.

Mac book and Ipad sitting on a table outside looking out over the back yard. This is my favourite way to relax.

Now don’t get me wrong I like a slow day, I love to relax, but I love to be busy. When I can’t because of health or whatever the reason is I feel like I have ants in my pants. I have to figure out ways to keep working towards those goals. Is this healthy? Some may say absolutely not, in fact they may tell me to meditate and take a look at my life. But I am telling you this is what works and we should not make others feel bad for being this way. It doesn’t need to be one or the other.

So if you are like me and thrive in the busy, have goals you are working every day to crush, love your career and put in the time to get to where you want to go and everyone is telling you to slow down. Remember you need to do what is right for your life, and know what fills your cup. If it is work, then you go girl and do what makes you the best version of you!

Until Next Time,

Ashley and Danson

Christmas with Chronic Illness

It is the holiday season that so many look forward to. It is also the holiday season which so many dread for various reasons.

There are many people who dread the family gatherings, many parties and things that are expected of people. Why, because they are chronically ill. You may not see it, because most of those living with chronic illness are so good at masking the pain with a smile. Most will not say how much pain they are in or how awful they are feeling because they want to make their family and friends happy. They want to participate, but then they pay for it sometimes for days.

I think one of the blessings that has come for many this Christmas season is that in many places they are saying to not visit and stay within your household. So as much as they will miss their families and friends they will not have to stay in bed for 2-2 days after one Christmas party because they over did it.

Having the ability to stay home and not explain why you are not able to make it, is like a blessing for so many. Now this year it is acceptable for people to connect via zoom or other online ways. Making it much more bearable and accessible for individuals who are chronically ill.

I have always really enjoyed Christmas but over the last few years it has gotten harder and harder. The houses full of family finding it hard to navigate around homes that are not yours. The pain from spending time in the car to get to different places, and the fatigue that hits you out of no where. The migraines that pop up….. There is just so much that goes into being sick.

Like so many I have always just smiled and laughed and hid the pain and feeling awful from those around me. I don’t want the pity and I don’t want to ruin Christmas so it has been hard. But this year I get to connect with family online, and relax on Christmas with my family doing what I need to do for me without having to feel guilty or explaining to anyone.

Lounging with my feet on the coffee table a candle lit and the Christmas Tree lit up. In this photo you only see my feet with cozy slippers the candle on the coffee table and the Christmas tree beyond.

Lounging with my feet on the coffee table a candle lit and the Christmas Tree lit up. In this photo you only see my feet with cozy slippers the candle on the coffee table and the Christmas tree beyond.

I love my family and friends but I want to be the best me when I am with them and enjoy their company and sometimes that isn’t possible if I am having a flare up and not feeling well. There are so many people who live the same experience that i do and I hope they are able to do what they need to do for them this year!

Merry Christmas

Ashley and Danson

No Social Media For….. 2 Weeks!

Hello everyone, it has been a while. I have been on social media for a few years now and have worked really hard to grow my blog and online presence educating and being a part of the change for those who are blind or partially sighted.

Social media has allowed me to be able to reach thousands of people that I never thought possible. But it also took its toll on my mental health little but little. I think with everything that is going on with Covid-19 and all the extra stress that has been in all of our lives I just hit a spot in my journey where I needed to make a change and a drastic one.

I have had a lot going on in my personal life, work life, momma life, guide dog life, chronic illness, trying to go to school life. There was just so much on my plate that it started to crack. The one place that was negotiable in relieving some of that stress was my online life. I do not share all of my life online so it was the easiest place to step back and just let it go. So November 14th that is what I did.

I had made my last post on instagram and never said anything about leaving, I just did. I put a post on my personal Facebook page that if friends wanted to keep in touch to reach out as I was taking a break and didn’t know when I would be back.

There are few things that we can really step away from and re-assess how it is affecting us, and social media and the online world is the one that we have so much control over. I would spend hours trying to stay relevant in the online world and make sure that I was sharing content that would always go towards the things I was passionate about, like disability, chronic illness, educating those who would read my content. But in all of that I lost myself.

There is so much more to me than my disabilities and even though I still am very very passionate about all of those things and want to continue to share and educate and create change. I am also very aware of the effects of social media and what that can do to us.

When you are online it is not always a nice place and you have to consciously ignore and leave behind that negativity that is so easy for individuals to spew when they are not in a good space themselves. And when we are not feeling the greatest ourselves that becomes almost impossible.

Over the last couple of weeks I deleted all social media platforms, youtube, my blog everything from my phone. I have seen a huge change in my mental health (I still have a long ways to go) that I can do it and that I need to reevaluate what role social media has in my life.

I found that even though I have built a community of people online I was feeling more lonely than I ever have. Building true friendships is something that I have always said didn’t matter to me, but that was because I have always struggled with friendships and even more so as an adult. But now I know that I am someone who needs those real connections to people. I need to be able to pick up the phone and chat with someone or send a hundred text messages back and forth during a week because those relationships are what make me feel whole. And I was not finding those scrolling online,

We all have a journey that we are on and this is just a portion of my journey. I have no idea where it will take me or where it will end up, but I do know that I love to write, educate, engage and create change, so I will never stoop doing those things. But how I do it, is really up in the air.

I hope you are all staying safe and I hope you take some time to think about what is bringing you joy this time of year and always.

Until Next Time!

Ashley and Danson

Imagine Helping Thousands with One Shovel!

Here in Canada and many other places winter is upon us. It is this time of year that I am reminded of how much my independence relies of the generosity of strangers to shovel the snow.

Being blind many people think is such a barrier to me living the life that I want and that my life must be so hard and awful because I am blind. However my life is just like anyone else’s, I have to do things differently in some cases but I work, I am a mom, sister, daughter, and so much more just like you are.

I love winter it is a beautiful season, I love the sports that come along with winter as well. I am itching to get to the ski hill if we are being honest and strapping on my snowboard. As much as I love winter, it can also be a challenge.

When I travel with my guide dog or my cane I am relying on the built environment around me to give me clues and landmarks to tell me where I am and that I am on the right track to where I am going. If I feel grass under my feet then I know I have veered from the sidewalk. Or I feel the dip in the side walk and the tactile cuts in the curb, I know I am at the intersection. There are many things that I use to help me navigate independently.

However, when the snow starts to fly, as beautiful it is it also covers up the built environment and erases everything tactile that I use to navigate. It can make is really stressful to get around and to be independent.

Black lab Danson walking through snow on the sidewalk.

I am not someone who wants to sit around and not be able to go out because there is no one around to come with me. And I am not alone in this in the blind community. There are so many blind individuals who are fiercely independent.

When I walk around my neighbourhood and people take the time to shovel the sidewalk in front of their home, I am so grateful. It means that I can enjoy my walk and relax just a little bit.

A shovel can give some individuals the ability to go out and enjoy a walk or get groceries independently. When I was a cane user I was not able to travel alone in many cases because the snow and unshoveled sidewalks made my world too inaccessible.

Black lab Danson walking on a sidewalk that has been cleared of snow.

If you take the few minutes to shovel your sidewalk in front of your home it will mean that someone who is blind or partially sighted is able to get out of their home more easily and be more independent. It helps so many and is always very much appreciated.

Imagine how that would impact your daily life if you needed to rely on the hearts of strangers to run your errands or enjoy a walk independently.

If you want to check out how Danson and I are able to navigate this weather check out my latest video on my YouTube channel https://youtu.be/YwygEegRfIY

Until Next Time,

Ashley and Danson