Ankylosing Spondylitis Made Me A Hoarder!
Ankylosing spondylitis takes away so much from those who have it. And, because of that, ankylosing spondylitis has made me a hoarder! I'm not specifically talking about the ones on TV with mountains of newspaper, food containers, and stuff piled to the ceiling. (Although I do have a little bit of “stuff.”)
I'm talking about the life essentials that we feel we need to hold on to.
Time is something I feel I hoard the most. Doing anything takes time. People with AS often need more time to do the same tasks. I don’t want to run out!
To achieve this, I wake up far too early on weekdays. Sometimes 2.5 hours before I actually need to leave the house. I don’t know how much energy I will have to get everything I need done, so I want to get an early start.
Showering can sometimes take up to an hour!
For clarification, the actual shower usually only takes 5-10 minutes (Or, sometimes longer if I find a song I can dance to). But, then, as many people with chronic pain experience, I sometimes need to rest after the shower. The heat from the shower both loosens up my joints and exhausts my muscles, leaving me to sit on my bed just staring at the wall waiting for my strength to return.
These are just two examples of how, as an AS patient, I feel I need to hoard as much time as I can.
The chronically ill believe we are only given so much energy every day to accomplish what we need to get done. Because of this, we also believe that we can hoard this energy and pack it away for when we really need it.
Some call it “resting,” I call it “saving for the future.” Much like with time, I want to make sure I have it for the unexpected. My nightmare is me giving it all at work, and then coming home to a flooded basement and now I need to work even harder all night long. It’s not the most fantastic way to be, and it does cause me some stress, but should this happen, I often don’t overdo it just so I can hopefully have a little gas in my tank when the world comes crashing down.
I also really focus (ok obsess) over limiting my movement. I hate coming downstairs only to realize I left my glasses or something upstairs. Or, when I'm shopping, finding out that after going all the way around the store I forgot something back on the other side.
This is why I plan my movements and make the most out of every step. I won’t go upstairs for one thing if I’m not bringing several other things with me. I map out my shopping trips to collect the most with the least amount of distance traveled. And, when I go to get something out of my car, I bring my dog with me, water the plants, and check the mail. All of this, saving me steps and energy.
Yes, I hoard food as well.
Like a squirrel prepping for winter, I want to be prepared for my flare days. So, I conserve food, buy cans and microwave meals, and always make sure I have plenty of peanut butter and bread. I don’t overindulge or snack because I want to make sure I at least have something to eat if I can’t leave the house. And, free samples? Yes please!
It’s not exactly filling my underground bunker, but sometimes it feels like it.
A packrat with brain fog
My last and final example of how I tend to hoard because of my ankylosing spondylitis, is my system of drawers.
While the previous examples dealt with conserving energy to live, this is more focused on preparing for the days I just completely lose my mind!
As I discussed in “Brain Fog: More Than Forgetfulness” short term memory loss is one of my least favorite symptoms, and it really hurts my self-esteem. Because of this, I have a series of drawers for specific things that are important to me.
My bedside table is where I keep the things I need to do my advocacy work like notebooks, good pens, headphones, and my microphone for making videos.
I also have a drawer for all my art supplies, and another just for tax documents. They are my drawers, I know what is in them, and nobody can touch them. (Seriously, dont!) Things outside these drawers might get lost, but as long as I have my most favorite things, I’ll be ok.
I hope (and seriously doubt) I am not alone in this.
Uncertainty for the future
Every day with Ankylosing Spondylitis is different, and we have no way of predicting what tomorrow will be like. Because of that we may become preppers, packrats, and even hoarders.
We meal prep, plan, conserve, and so many other things, just in case we are faced with the inevitable.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?