Life with Psoriasis

my (morning) disability routine: blogging, movies, and medication!

Not every day is exactly the same when you have a disability. But for me, it’s easy to fall into a routine. I find routines to be very comforting and safe. It gives me a sense of pacing and grounding in my life. When my routine is thrown for a curve (such as when I was in school or when I recently went on my graduation trip–where most things are very spontaneous–I find that’s where I begin to struggle. My routine is not glamorous, or Pinterest worthy, or aesthetically-pleasing. My routine consists mostly of trying to get through the day and onto the next one. But it’s mine…and I’ve accepted it.

Photo by Ioana Tabarcea on Unsplash

6:30 a.m.

My mornings usually begin a little something like this, minus the cat (I’m allergic + also afraid). For the past week, I haven’t been sleeping in. Instead, I’ve decided to take advantage of the morning. After graduation, I began sleeping in until 10 a.m. after going to bed at 3 a.m. I quickly realized that this was not benefitting me, so after my graduation trip when I received my job, I started waking up around 4:30 a.m. Since then, I’ve quit my job for my health (you guys seem to really gravitate to this post) and now I let my body wake up naturally. Usually around 6:30-7 a.m. with no grogginess. However, I do wake up with joint pain every morning and have to wrap myself in my heated blanket until further notice!

7-9 a.m.

I treat my blog, like a job, which then provides structure and routine for my day. After spending a little time pinning on Pinterest and responding to any DM’s or blog comments I may have gotten while I was asleep, I jump right into making my blog post for that day. When I had previous blogs in the past (I used to be a lifestyle blogger right before I got sick two years ago, but quit because it felt unauthentic), I planned every post. Now, I wake up and decide that day. I use Pinterest for inspiration sometimes, but I try not to put the pressure on myself to fit in with what everyone else is writing. I don’t focus on SEO or keywords. I write what I feel.

The first thing I do before writing a post is creating a blog graphic. I use Canva, and have for years. Their interface is incredibly easy and I like their wide range of social media templates, fonts, and colors. *This is not sponsored by Canva, but maybe one day! :)* I then choose any photos I’d like to use from Unsplash (a free photo website where photographers upload beautiful images that are perfect to use for either blogging or social media! No cheesy stock photos here!) After the blog post is written, I spend about another hour scheduling tweets on Hootsuite. I find Hootsuite to be the most effective for me because I can easily copy and paste hashtags from the previous day’s blog’s with their content calendar. Hootsuite also has a mobile app too, making it easier to post tweets if you’re unable to spend time promoting blog posts or other social media things. I schedule my posts and tweets for 11 a.m. EST, putting in as many hashtags as I can. Then, I schedule again for four more times throughout the day. After I started doing this and pinning my blog posts to Pinterest, I noticed my engagement increased little by little each day!

9-11 a.m.

Once everything is scheduled, I usually can relax for a while I enjoy a healthy breakfast. (see what i eat in a day or photo above) Around this time, I try to put my phone down if the arthritis in my hands begin to flare. I try to enjoy the news, but often times it’s pretty sad, so maybe I’ll watch YouTube videos. I really hate scrolling through social media because I found that I can’t enjoy my food when I do this, but it’s a bad habit I need to break.

I occupy myself until my post uploads and my tweets are sent at around 11 a.m. EST. There’s always a lot of anticipation for this. When I first started blogging (not too long ago), I’d constantly be checking my stats and wondering why no one was commenting AS SOON as my post was uploaded. Now I’ve become more relaxed, accepting comments gratefully as they come.

Photo by The CEO Kid on Unsplash

12 p.m.

From this point of the day onward, I don’t have much going on. The pain may or may not have reached a peak. Pins and needles shoot through my back, shoulders, and legs, which is why I get up so early and tackle blog things when the pain is just numbing and annoying. I take first dose of pain medication, which then makes me drowsy, and I fall asleep for about an hour. Then, the morning is over! For these past few days, the pain has been hard to endure. So I take it easy. We’re also experiencing a heat watch, which means it’s dangerous for babies, the elderly, and those with health conditions to even be outside. Frankly, I like staying on my couch. For someone with a chronic illness, this is an accomplishment for me: moving from the bed to couch as it requires to take the stairs, which then inflames my joint pain. I really only have the energy to watch a movie and eat popcorn, so I spend the rest of the day trying to tame my flares and distract myself.

I chose this photo as sort of a confidence booster for myself because often times I am called “lazy” by family members and friends for not being able to be “active” in ways people think I should be. It hurts, but I’m doing my best. That’s all I can do.

Thank you so much for reading! Comment down below one thing that you have to do every day!

I am now taking submissions for guests posts on this blog! So, if you have psoriatic arthritis, a disability, chronic illness, or struggle with your mental health, I want to hear from you! DM me on Twitter or drop me an email at thepsoriasisclub@outlook.com, if you’re interested.

I’m also thinking about creating a Twitter chat for us! Let me know if this is something you’d like to participate in.

Love always,

-TPC

Twitter

Pinterest

Standard
Journal

i quit my job for my health, but now i’m lost.| how i’ve been feeling lately #1

Hi there.

I’m going to be honest with you: I do not feel my best. Mild, but prevelant anxiety has crept it’s way back into my life. I feel as I am in a fog, sort of listless in life. I do not enjoy this feeling in the slightest. But for today’s post, I will just vent and put everything out there. If you’d like to read more upbeat posts about psoriasis advocacy, here are some recent posts:

But if you’d like to stay, you can. And if you’ve ever felt the same way I have, you can always return here and read this post. You are not alone.

I’ve had to quit my job.

After graduating last month, there was pressure to find a job–immediately. I searched for weeks on Indeed, applying as fast as my fingers could type. For about a month, I was swimming in the sea of oblivion, not knowing if I’d ever get a job.

And then huzzah!

A job fell into place. But just as sudden it fell into my lap, it suddenly became toxic. I was hired the day I was interviewed and was convinced that the job would be smooth sailing. However, that wasn’t the case. There were many issues from the start that I pretended didn’t exist. Besides that, the job was physically taxing on my body. Even though I only worked a few days a a week, I was required to transport heavy equipment and move things that I wasn’t expected to while others stood around and watched. On Monday of this week, I came home and my hip was locked so tightly that I wasn’t unable to walk up the stairs. I cried for hours, went to work the next morning, and continued to suffer more. I understood that there was nothing that the company could do about my pain. But besides that, the environment itself was draining and I was often being commanded by the male employees and told to undo things just to redo them and be critiqued. I was also being rushed from the male employees for them only to get frustrated and snatch the work from my hands. Also, a male employee claimed he was “passing by me” and brushed up against me.

I quit the next day, after my manager coincidentally called me asking “how are things?”, and I didn’t hold back.

I’ve felt very alone this week.

Not being in school for so long and not being around my friends has taken a toll on me. I spent a lot of time alone and reflecting, often getting caught in my head and trapping myself in negative thoughts. Not being around people who are like me has caused me to feel very confused at where I am.

I’m struggling with the arthritis pain, upset that I haven’t adapted to it yet.

I’ve been struggling with psoriasis and psoriatic arthritis for close to two years. But since graduating, my pain has seemed to increased. I’m not sure if the depression/anxiety cycle has affected the pain in my joints, but I’m having a hard time coping. I know the pain is not my fault, but I often blame myself more times than not for how I’m feeling. It’s very hard to function when the pain is this strong. I remember the days (not too long ago) when walking around in the sun didn’t affected me. But now I spent most of my days in bed, blogging and reading, trying to distract myself from the pain. It’s frustrating to have pain every single day and not get a break.

I feel very lost and it’s as if I’m floating.

I don’t like talking about my condition with my friends. I usually just keep everything bottled inside. Just a few nights ago, I did open up to a friend and I felt guilty. I felt guilty because I opened up to them. They were asking questions about the pain, trying to find a situation in how pain related to them. But they haven’t responded to my messages in about two days and I fear that I have burdened them with my problems. I don’t like speaking about psoriasis unless it’s with someone who has experienced the same as me, because I think others without it, struggle to process the severity of it and flee or they say, “I’m sorry,” and we move on. No one is obligated to listen to me. I will not force them to.

Thanks for making it to the bottom, if you did! I’d like to make this a series called “How I’ve Been Feeling Lately,” maybe posting weekly updates on my physical and emotional health. Let me know if I should continue!

I’m currently taking written submissions to be featured on the blog! Send me a DM on Twitter @lepsoriasisclub or send me an email: thepsoriasisclub@outlook.com

Love always,

-TPC

Twitter

Pinterest

Standard
Life with Psoriasis, Travel with Psoriasis

what look for in a disability accessible amusement park

Amusement parks, while fun and exciting, can create either memories of happiness or dread for someone with a disability.

Psoriasis and psoriatic arthritis is more than a skin-deep condition. It goes beyond the skin layers, and what I’ve learned is that what lies beneath the skin is more of a struggle to cope with rather than the skin sores and dry patches themselves.

Even though I have managed to tame my psoriasis flares, the joint pain from psoriatic arthritis is something that creates daily challenges for me. I cannot stand for long periods of time, especially in the summer heat. Walking far distances in parks can quickly become difficult, especially when there are not ample benches. I overheat easily, because my skin is already warm and inflamed on any given day. I tend to have shooting pain in my neck, wrists, and knees. Most days don’t pass without a nap curled in my heating blanket. On days I’m unable to nap, I become irritable, which then increases the pain.

Last week, I travelled to three major theme parks to not only experience what they had to offer, but see if they were accessible for someone with disabilities. Although going to an amusement park used to be a no-brainer, now I am a little hesistant when traveling to locations that have spread out attractions and require constant, all-day walking.

Disability Access Passes

There is no shame in obtaining a Disability Access Pass. It will create ease in your experience, and if this is something that you find helpful, then don’t be afraid to share it with others. However, I wasn’t aware that Disability Access Passes existed until AFTER I went to Disney World, Legoland, and SeaWorld Orlando. Yet, I was happy that this service was offered. They are all pretty much the same across the board: those with disabilities are allowed to either enter in the exit of a ride and enjoy the attraction at their leisure without the strain of standing in line. Or, you’re assigned a return time to come back to avoid the long lines. I really wish I’d participated in these services, as each day became harder to navigate the park with stand-by lines. But here are some links to Disney World’s, Legoland’s, and SeaWorld’s DAPs:

Disney World

SeaWorld Orlando

Legoland (Hero Pass)

Ample Seating/Indoor Rides

I recommend looking at video walkthroughs of amusement parks before buying a ticket. If you’re unable to get a wheelchair (or think you may not need one, like I do, but wish I had), it’s important to know how the park is laid out. I’d been to Disney World quite a few times and had known that there was plenty of indoor rides and benches to sit on when my arthritis started to flare.

However, I was not aware about how large SeaWorld Orlando was and the lack of benches and sitting areas. SeaWorld Orlando is laid out in an interesting way that requires walking right under the sun. There are pockets of trees to create shaded areas, but the park is virtually uncovered. I only went on one indoor ride that provided temporary relief. However, it was a motion simulated ride that ended in subzero, artic temperatures called Empire of the Penguin. It was so cold that staff was wearing parkas. But cold trigggers my psoriatic arthrtis, so I was not happy when I got off this ride.

Yet, I had a more enjoyable time at Legoland Orlando. It had plenty of shaded areas covered by trees along with benches to allow me to stop along the way. Quite a few of Legoland’s rides either had covered stand-by areas or indoor rides. Two indoor rides that were so accessible, I was able to ride them for than once was the 4D theatre and the Ninjago ride. The 4D theatre had bubbles, water, and air-conditioning so it was a safe space to cool off. The Ninjago ride was very fun, but did get tiring as it requires to use your arms repeatedly to activate the 3D screen. You sit in a large car that holds four people and you wear 3D glasses. In order to participate in “battles” to have to swing your arms forward in chopping motions to send simulated objects that will hit things and earn points. Here’s a video example:

Inside the Magic

If this is something that may be difficult, no worries! You can sit an enjoy a smooth ride in air-conditioning.

Wheelchair Services

At all three parks, wheelchair services were offered. But it seemed as if SeaWorld was the least accessible for those in wheelchairs. There was a fair share of dips and hills on the walking paths that sometimes were expected and/or straining. Ironically, the least accessible area of the park was entering Seasame Street Land. I had a really hard time naviagating through this area as there is a large, downhill slope before you reach Seasame Street Land that was incredibly dangerous for those with and without wheelchairs. Also, the park is spread out, but packed. It’s a bit unnerving. Rides are in the back areas of the park, but when you reach that area, there’s a lot of other attractions that it becomes jammed with other park goers, making it practically inaccessible.

Legoland and Disney, however, were easier to navigate. There weren’t any significant hills I came across in either of the parks. The walking paths were wide enough for wheelchairs. While both parks are large, they are designed to comfortably fit wheelchairs, strollers, and walking park-goers without any added stress. (Expect for when Disney’s Magic Kingdom gets overcrowded for the fireworks, it may be hard to walk through, but this is at the end of the day!)

Overall, I would say that Disney World and Legoland have it down when it comes to accessibility services. SeaWorld does have room for improvements. Yet, all three parks offer something different, and fun for everyone!

Thanks for reading! Let me know if you’ve ever experienced an accessibility difficulties or would like to praise an amusement park for the services that they offer!

Love always, 

-TPC

Twitter

Pinterest

Standard