Sometimes I wake up and it hurts. Sometimes it’s OK. Sometimes, it’s OK for a very long time but then, the pain comes back full force.
Sometimes, I wake up OK, and then, in the middle of the day, I become extremely tired and it’s difficult to move. It may be related to what I did in the morning or maybe not. It’s random.
It’s like a game of Tetris. It’s like trying to combine things together but I don’t know what is going to come.
I know what I can do and what I can’t do. I have an understanding of my situation and my body. I know that walking a long time every day is difficult and painful. I know that if I walk a long time one day, the other one I need to rest. Maybe I would be able to walk a long time this day too but the day after, my body will be very tired and painful and I will barely be able to wash myself.
Besides, my “long time” is different than the “long time” of people who don’t have a chronic disease or a disability. My “it’s not painful” is also different. My “I’m tired” is different too.
Because it is always painful. Because there is always a little bit of pain there and there.
But at some point, this becomes my norm, this becomes my body in its usual mode. Same for the fatigue. When the body struggles with inflammation, it’s tiring. And with ankylosing spondylitis, I always have inflammation. Always.
It’s not about trying to have no inflammation at all but to control its level and to be sure, check after check, that it’s more or less the same level every time. If it is constant, then it means the treatment is still working and I am more or less OK.
(The issue is when the level of inflammation goes up. If it does, well… it becomes complicated and it can be worrying.)
It’s the “it hurts beyond the usual pain” that becomes the alert.
So this status quo exists even before adding anything else.
What about stress? We all experience stress here and there.
With my autoimmune inflammatory disease, stress is more or less prohibited. Stress creates inflammation. So in order to not add inflammation to an already-inflamed body, I have to not feel stressed.
Well, sorry, I failed. I struggle with anxiety.
Guess I play this game on Hard mode.
During the peak of my anxiety, it hurts. Like it hurts hurts. My body is contracted, and it becomes difficult to move because it’s painful. And I am extremely exhausted.
As you can see, it’s already a difficult balance and I didn’t even add working.
So let’s talk about working.
Every job is not accessible to me. But that’s fine, I don’t really see it as the issue. The real issue, in my opinion, is about the amount of time I can work without putting my health at risk and the amount of time I need to work to earn enough money to live.
The issue is: these two amounts don’t align with each other. There is a huge difference between the two.
If I do a full-time job, it will hurt me. I talk about dangerous exhaustion, a huge level of pain that is life-altering and, at one point, a massive struggle to move. My abilities to move, to walk, to stand up, to use my arms, and to hold things will be put at risk.
Let’s say that I work a full-time job for a while, and then I stop because I can’t do it anymore. The amount of time I need to really rest and restore my health will be long and when I will go back to my initial health, the truth is, it won’t be my initial health.
I’ve already experienced this. At one point, I had a high level of inflammation in my left elbow. It was swollen, very painful and it was blocked. I couldn’t extend my arm or bend it. Four infiltrations were needed to solve the issue. During this long time of trying to lessen the inflammation, I didn’t use my left arm; instead, I used my right arm. So at one point, my left arm was hurting because of inflammation and my right arm was hurting because of excessive use.
After the four infiltrations, the level of inflammation went back to a normal one. As I said, it’s never 0 inflammation but it is all about getting the inflammation to a controlled and more or less acceptable level. The problem is, since then, I’ve never fully recovered.
Because I didn’t really use my left arm for months, the muscles have become weak. So when I use it now, it hurts because my arm hasn’t strength anymore. And my right arm still has lingering pain for all the overcompensation I had to do with it.
So I went back to the previous status quo in terms of inflammation level. I rested my arms as much as possible, I did physiotherapy and osteopathy. I did some physical exercises. It’s better now but the damage has been done. There are some consequences of this episode.
So I can’t do full-time jobs for a while, stop, then rest, then do it again. Because it’s never the same again, it’s never the same game or the same race again. The starting point is different.
So let’s say I don’t do a full-time job but a part-time job.
Then it’s all about surviving with low income. I’ve already experienced this and I only managed because I wasn’t alone. I had my parents and my partner.
But it’s not an answer to the issue. I shouldn’t have to rely on others to survive financially. I should be able to have an income that allows me to pay the rent and the food and that allows me to live.
It’s impossible with a part-time job.
I’ve tried multiple jobs and stopped them when I couldn’t do it anymore. I’m trying to find a balance between my health and my money. So far, I haven’t succeeded. One always comes at the price of the other.
I think maybe I can try something by becoming my own boss, you know, creating my own job. But to be honest, I don’t really know what to sell, what to create, what to do.
What can I offer? What can I do that can allow me to earn money?
I don’t know the answer yet but I’m trying. I have my Medium account, writing about some stuff. I teach French nowadays as a self-employed teacher. I’m trying things. I’m trying. And it’s important to acknowledge that.
I hope I can find my way of working. I don’t want to be scared about my income all my life and I need to respect my physical condition. By finding a balance between these two, I will be able to live my life.
As I should, like anyone else.
If you’re struggling with this challenge too, check out our article: Working from Home with a Disability.
Photo by Czapp Árpád on Pexels.
I have ankylosing spondilitis, anxiety, and a lot of determination! I am trying to find my way, my job and what I want to do with my life. I want to share about chronic disease, chronic pain. And also, I want to share awareness about misophonia and misokinesia. I live with these two conditions, it's really challenging.