I Don't Like This Either!

Comedian John Mulaney once said, when talking about his bad driving, “I hear you honking, and I also don’t want me to be doing what I’m doing!”

As AxSpA patients we have to do a lot of annoying stuff! Annoying to ourselves and the people around us. It’s not always easy living with us, knowing us, or being us. AxSpA is very annoying!

We are always low on energy, needing special treatment, taking off from work, and filling ourselves up with pills. We know you don’t like it, we hear your honking, and I want to assure everyone, we don’t like this either!

Like Mr. Mulaney, we are stuck in a “U-Turn” lane we would love to get out of, and there is no level of honking required to convince us about that. And yet, the people around us still honk away.

I don’t like my lack of energy

I used to have tons of energy! Going out on 10 mile runs in my youth and feeling like I could go 10 more. AxSpA, of course, changed that.

Now, getting out of bed and taking a shower can be more exhausting than running 20 miles. Forget about cleaning the house, cooking food, washing dishes, and caring for anyone but ourselves. I hate that my life has become like this!

Believe me, I want to be a functional member of my household. I want to be able to do everything I can to help the ones in my life and make my house a little more livable. But, after work, I'm more than exhausted, I feel like I'm being crushed by the world. Gravity becomes my worst enemy.

I find the strength to make some food, and take my dogs out several times. But, the cat boxes still need to be scooped, the trash needs to be taken out, and the towel bar is coming out of the wall.

Then, I start to cry.

I don’t like not being a functional member of my household, and I sure wish I could change that.

I don’t like needing special treatment

The best thing we can do as AxSpA patients is to listen to our bodies and take a break. Everyone is always talking about “Self Care.” The idea that if you want to protect your mental and physical health, you need a little “Me Time.”

We, however, sometimes need a lot more time for ourselves. Time with a heating pad, time laying in bed, and time waiting for meds to kick in. This time isn’t always predictable and universal. Sometimes laying in bed for an hour just isn’t enough.

“You took a 3 hour nap today. You should be good and rested.”

Yep, I should be, and yet, I am not.

I don’t like needing breaks, smelling like cream, and going to doctor’s appointments. I know all this special treatment doesn’t always fit into other people’s schedules and expectations. And, yet, we really have no other choice.

I don’t like this special treatment either!

I don’t like taking off from work

My wife used to get onto me for never taking off from work. I saved my sick days like they were valuable currency. Well, turns out, they were. While I am not ever “sick” with your household cold or flu, in the past few years I have had to take time off due to severe pain, exhaustion, and most of all, doctors appointments.

On a side note, why can’t doctors have special hours for people who work full time? 11am is not convenient for a school teacher.

But, I miss work and I hate it.

I love doing my job. I love being there for my students. However, I still need time for self care and treatments. If I can’t do everything I can to “fix” my body, then how can I be expected to continue work. Quid Pro Quo.

You need to give me a little so I can give my time and energy back to you.

It doesn’t mean I want to miss work, or that I even enjoy my time off. It’s just something I need to do.

I know it’s annoying that I take so much time off, and I don't like it either.

I don’t like taking so many pills

This next topic unfortunately not only falls on the able bodied people in our lives, but also the ones who manage their AxSpA without pharmaceuticals. Those who see us taking something for pain, stiffness, exhaustion, mood, and any other symptoms deemed treatable. We take a lot!

There was a time I was taking 13 pills at one time, and more throughout the day. When I was adding in some herbal remedies, I was taking close to 80 every day. Do you think I like doing this? Do you think I like needing to stop my day and swallow pills? Or, the side effects of nausea and lightheadedness that sometimes come?

Of course not!

But, I also don’t like being in pain and unable to bend over to pick something off the floor. The meds unfortunately help with that.

And I give a lifetime of respect to the people who can treat their AxSpA with simple yoga and green tea. That’s wonderful. I am not married to the idea of taking pills, nor do I want people to only use pharmaceuticals. My catchphrase is: “What works for one person doesn’t always work for you”. Talk to your body and see what it needs.

Taking pills and doing injections are not what I dream about.

Not feeling pain or wanting to die is what I strive for. Pills and injections are what help me the most.

That said..

I know I take a lot of pills, and I don't like this either.

I don’t like any of this!

I'm unreliable, I need too much time, I take a lot of naps, I miss more work than I want to, and I swallow too many pills every day. This isn’t something I enjoy at all.

But, these are the things I NEED to do just to function a little bit. If there was another way, you better believe I would be doing that. Yes, I hear your honking, and I also don’t want to be doing what I’m doing.