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.

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